Re: [TMIC] Fwd: TMIC] Laugh for today
i would have paid to watch that live,he he he he he From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, August 13, 2013 11:15 AM Subject: [TMIC] Fwd: TMIC] Laugh for today Hi All, This came off the Quad list. It's kind of cute and not long at all. Humor is good for the soul. Love, Jude From: wheelch...@aol.com To: poaj...@sbcglobal.net, quad-l...@eskimo.com Sent: 8/12/2013 7:31:58 P.M. Eastern Daylight Time Subj: Re: [QUAD-L] Laugh for today Humor is Healthyand cures! Best Wishes In a message dated 8/12/2013 5:30:56 P.M. Central Daylight Time, poaj...@sbcglobal.net writes: Friend of mine sent this to me, it was just too great not to be shared. http://biggeekdad.com/2013/08/geriatric-traffic-jam/ Joan
Re: [TMIC]
5 years ago i woke up to a numbness from the top of my head on the right side to the bottom of my feet.left side had reversed the sensation of hot and cold, the banding was tight. since then my numbness turned to pain and the banding is there and at times like a hot iron in my side..i take pain meds also every 6 hours along with the other meds.the only recovery i have had is my gate is a little better. thats a long story shortened. John in WV From: Betty Clark xbeecla...@gmail.com To: Janice Nichols jannic...@gmail.com Cc: tmic-list@eskimo.com Sent: Monday, June 24, 2013 1:54 PM Subject: Re: [TMIC] I woke up 7 years ago with a numb arm and intense neck pain. The numbness progressed over 24 hours to my right arm, toes, then my left leg along with leg spasms which prevented me from being able to fall asleep. The next afternoon, I was taken to the ER and given several tests including a spinal tap and MRI. After being diagnosed with TM and experiencing paralysis from my feet to my armpits, I was given steroid treatments for four days, then spent a month in a re-hab facility learning to walk again and take care of my personal needs. The neck pain went away, but I have chronic banding and intense pain, as well as no temperature sensation from the chest down, bladder and bowel issues, and hypersensitivity to touch and fabrics. In addition, the function on both hands was so severely compromised, it required my quitting my job of 31 years as a document specialist for Hewlett-Packard / Agilent Technologies and going on permanent disability. I now take pain and nerve medication every six hours in order to function daily. At the end of each med cycle, I am very aware of the pain and banding creeping back in. Not a day goes by without some level of pain. I am no stranger to pain having suffered severe migraines from age 15 to 50 and having 9 vertebrae fused at 19 as a result of scoliosis. (For that I spent 11 month in body casts from my head to my knees.) I have to admit the migraines were probably the worst pain I've ever suffered, but it was always temporary (every couple months). However, the constant daily pain of TM really wears on your body and soul - and getting older isn't helping! I've just turned 60 and the realization that longevity runs in the women in my family (both sides living well into their 90's), I wonder how I will be able to handle the pain another 30 years - assuming I also live that long. Betty (in Northern California) On 6/24/2013 7:38 AM, Janice Nichols wrote: Hello! When I have read the stories of how TM first attacked you all, some/many have said that you had a severe pain around the middle of your body – banding. And for some, it has stayed with you. I would like a response from all of you as to whether or not your TM started with the severe pain or not. Also, is it still with you today or did it get better with time/meds. I would like to be able to give my doc some kind of percentage of how TM has hit myself and others. Would really appreciate responses. Thanks, Janice
Re: [TMIC] Fwd: Quote of the Day Judith
i have tasted a bunch of those apples,,some bitter,,some sweet~~ yet i have tasted From: Pat Voorheis pjv1...@chartermi.net To: Janice Nichols jannic...@gmail.com Cc: heyjude48...@aol.com heyjude48...@aol.com; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Friday, May 17, 2013 7:49 PM Subject: Re: [TMIC] Fwd: Quote of the Day Judith It might be true from the writers perspective, however, I didn't find it to be inspiring? Patti. - Michigan On May 16, 2013, at 2:13 PM, Janice Nichols jannic...@gmail.com wrote: Well said! Janice From: heyjude48...@aol.com Sent: Thursday, May 16, 2013 10:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: Quote of the Day Judith Hi All, I had to read this one three times before I finally understood what it was saying. I don't know if I like this format or not, what do you all think of it? I love you, Jude From: inspirationalda...@inspirationaldaily1.com Reply-to: re...@tamtamtap.com To: heyjude48...@aol.com Sent: 5/16/2013 9:48:47 A.M. Eastern Daylight Time Subj: Quote of the Day Judith Newsletter - Thu, 16 May 2013 Today's Daily Inspiration Life will break you. Nobody can protect you from that, and living alone won't either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could. — Louise Erdrich Inspire Others. Submit a famous quote or even one of your own. Your quote could be published in our newsletter! Have we inspired you? Please tell us about it, we would love to hear what you think! Do you have ideas on how we can improve Inspirational Daily Newsletter? Please share with us. Follow us on Facebook You are subscribed to this newsletter as heyjude48...@aol.com. If you no longer wish to receive this newsletter and want to unsubscribe click here. Unsubscribe by Mail: Support Dept., PO Box 29502 #21320, Las Vegas, NV 89126 Toll Free: 888-840-1465 193350
Re: [TMIC] CONCUSSION
wow! concussions,, pseudos,,kudos! i hate it where we are but i am so glad we are who we are!! just when ya think it's safe to go back into the water stay tough!! From: Susan Kleinz skle...@cox.net To: Gary Thomas gbthomas8...@sbcglobal.net Cc: Janice Nichols jannic...@gmail.com; tmic-list@eskimo.com Sent: Saturday, May 11, 2013 11:29 AM Subject: Re: [TMIC] CONCUSSION Janice: wow. what a bummer. I am so glad you are all right. anybody ever had a Pseudo Exacerbation of Transverse Myelitis? Just got out of 4 hellish days in the hospital where they gave me 1,000 ML of Prednisone (IV) with no lag medication. So, sick as I've ever been! bla bla bla! Sharing my adventure, too! but seriously, has anybody heard of this? Susan in Phoenix On May 11, 2013, at 6:55 AM, Gary Thomas gbthomas8...@sbcglobal.net wrote: I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff). My husband called 911 and they transported us to the hospital. I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately. The ER gave me an IV to put in meds for pain (!!!) and nausea. That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head! They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] getting emails
glad you mentioned that,,i just seen several in my spam folder!! From: rn11...@yahoo.com rn11...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Thursday, May 2, 2013 10:44 PM Subject: [TMIC] getting emails Hi, I have 8 emails in my inbox and 7 in my spam folder! This makes no sense to me. Cheryl
Re: [TMIC] Re: Attention -The TMIC List
yes From: Kim Harrison kimharrison7...@att.net To: Cindy Budrow cinb...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com tmic-list@eskimo.com; heyjude48...@aol.com heyjude48...@aol.com Sent: Thursday, May 2, 2013 5:17 PM Subject: Re: [TMIC] Re: Attention -The TMIC List Yes Sent from my iPhone On May 2, 2013, at 5:07 PM, Cindy Budrow cinb...@gmail.com wrote: Yes On May 2, 2013 4:46 PM, Janice Nichols jan...@centurytel.net wrote: Sorry I am late to respond. Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us.We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
Re: [TMIC] Re: Transverse Myelitis
in 2008 i was driving a truck,a tractor,i was having some trouble with my right leg,,wasnt just right but nothing so unusual that i really sought medical attention. after a few days my right foot felt as if my boot had gotten wet and the material up in the toe area was wadding up but i didnt remember getting my boots wet.then when i got out of the truck it felt like i was still in the truck,,the vibration of the moter running,,i even asked my wife if she felt anything buzzing the ground and i was real tired. this went on a couple of weeks and then one morning i was in the shower and on my left side the hot water felt cold,,i was dizzy and sort of disoriented,,i turned the cold water on and it felt hot on my left side. after the shower i started downstairs and it felt like the steps were moving away from my feet,,on my right side i was numb from the top of my head to the bottom of my feetthought it was time to go to the Dr,,and this was the beginning of my wonderful journey. i have had little improvement but changes are the numbness has turned to pain,mainly in my right side and both legs,,and the burning and buzzing.. so much for a short paragraph... ;) From: Dalton Garis malugss...@me.com To: heyjude48...@aol.com; tmic-list@eskimo.com Sent: Saturday, April 27, 2013 8:45 AM Subject: Re: [TMIC] Re: Transverse Myelitis I'm in; Very useful, both for the reader and the writer. Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Judy heyjude48...@aol.com Date: Friday, 26 January 2013 11:09 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 26 Apr 2013 20:10:06 -0700 (PDT) Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
Re: [TMIC]
if the math works out,1-5 in a million gets TM if you know the number you have and can match that ratio then you will find,,,stuff. From: Roger Terese Pratt r.c.pr...@frontier.com To: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Monday, February 18, 2013 6:00 PM Subject: Re: [TMIC] Janice, My wife has worked for Social Security for the past 18 years and has been aware of others in our area of Washington that have gotten TM as follows: AGE: 12 - 3 people 20's - 1 person 40's - 2 people (one of them me) Roger in Kennewick, WA From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Monday, February 18, 2013 11:13 AM Subject: [TMIC] Out of 27 people responding, this is what I came up with. AGE: 13 - 1 person STATE: California – 3 persons 20’s - 2 people Michigan – 3 persons 30’s - 2 people New York area - 3 persons 40’s - 7 people Virginia - 2 persons 50’s - 8 people All the rest of the states were - 1 person 60’s - 7 people 70’s - 1 person UK - 2 people Was disappointed with how few responses there were - was hoping for a better tally. Oh well. Here it is. Janice
[TMIC] numbers
that ratio remark was something that just popped out of my highly medicated mouth.
Re: [TMIC] AGE AND STATE
2008 48 WV From: fatimah shehadeh fatimah.sheha...@gmail.com To: Susan Kleinz skle...@cox.net Cc: Nikki Macleod nmacleo...@yahoo.co.uk; laura.eich...@gmail.com laura.eich...@gmail.com; tmic-list@eskimo.com Sent: Wednesday, February 13, 2013 10:43 AM Subject: Re: [TMIC] AGE AND STATE At 45, NJ On Wed, Feb 13, 2013 at 10:29 AM, Susan Kleinz skle...@cox.net wrote: Susan Kleinz, 36 and 57 - two major episodes - Phoenix, AZ On Feb 13, 2013, at 6:42 AM, Nikki Macleod wrote: Nikki - 23 - Durham, UK. Sent from my iPad On 13 Feb 2013, at 02:38, laura.eich...@gmail.com wrote: 40 years old. North Carolina, USA. On Tue, Feb 12, 2013 at 9:16 PM, Barbara H. barbara...@gmail.com wrote: I was 38 and near Atlanta, GA at the time TM struck. Barbara H. Sent from my iPhone On Feb 12, 2013, at 8:17 PM, Janice Nichols jan...@centurytel.net wrote: I am requesting a quick answer from all of you, whether you just read the posts or usually respond to comments, questions, etc. A long time ago, I asked TM’ers to give me the age at which TM struck you. Since then we have added a lot of people to the group and I would really like another tally. Also, would you mind giving the state you were living in when TM struck? I would add these up and figure out what the average age TM struck and what state seems to be most prominent. Thank you. Janice – age 60 – Missouri -- Laura www.photographybylauraann.com/blog www.facebook.com/PhotographyByLauraAnn (please like my biz page)
Re: [TMIC] Hi group.
Howdy Dennis From: dennis rabalais dennis_rabalais20...@yahoo.com To: LIST tmic-list@eskimo.com Sent: Thursday, February 14, 2013 1:54 AM Subject: [TMIC] Hi group. Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I was paralyzed at 29 years old. It started out with West Nile virus and inturn started the onset of TM. I 've lived in nursing homes since then. It's been very troubling, something I cannot understand why it happened, or even how. I've gone through major depression and still going through it. Well, that's my story. Nice to meet all y'all. God bless and have a great night! Sent from Yahoo! Mail on Android
Re: [TMIC] Re: Subscribe Shingles
ALTON THATS THE FIRST TIME I HEARD OG IT BEING A PHYSICAL BLESSING..LOL From: a-ry...@comcast.net a-ry...@comcast.net To: Deb Monteleone aiki...@optonline.net Cc: 'Pat Cooley' patticoole...@gmail.com; heyjude48...@aol.com; jan...@centurytel.net; tmic-list@eskimo.com Sent: Sunday, January 27, 2013 12:08 PM Subject: RE: [TMIC] Re: Subscribe Shingles I went into Johns Hopkins MC for something else, and while I was on the exam table, the examiner noticed the red spots of shingles on my side. However, they were in an area where TM had taken away my sense of touch, so I was unaware of the attack. I recommend this good planning ;-) Alton - Original Message - From: Deb Monteleone aiki...@optonline.net To: 'Pat Cooley' patticoole...@gmail.com, heyude48...@aol.com Cc: jan...@centurytel.net, tmic-list@eskimo.com Sent: Sat, 26 Jan 2013 18:07:22 - (UTC) Subject: RE: [TMIC] Re: Subscribe I just had Shingles this last Labor Day. Noticed raised bumps on my stomach, left of the midline, around to the spine. PA didn’t mention shingles, next day, Saturday went to the emergency room as my husband and I thought it was shingles and know the importance of getting the medication early. Thank God, I received the medicine even though it was at the end of the timeframe but it definitely lessened the attack. Felt some pain, woke me up a few nights, but between the early intervention and the nerve pain meds (Neurontin) I take, it wasn’t really that bad or long. Make it a great day, Deb From:Pat Cooley [mailto:patticoole...@gmail.com] Sent: Friday, January 25, 2013 10:20 AM To: heyjude48...@aol.com Cc: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - Wisconsin On Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote: I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. Jude, Michigan In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes: For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really looking forward to our new future. At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM. I had not been sick at all for a long time before TM either. I think it is like MS or any other disease like that - it hits when it hits. For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems. Janice From:Robert Pall Sent:Wednesday, January 23, 2013 12:56 PM To:heyjude48...@aol.com ; i.whidd...@sky.com Cc:tmic-list@eskimo.com Subject:Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458
Re: [TMIC] Tonight, Today, Tomorrow
i was a work-a-holic i sure miss that! From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a demanding person because of TM. I hate that I've had to give up driving and remember how it used to feel heading down the highway with my arm resting on the window turned all the way down. Always remember that today could be potentially the best day of your life. Never take today for granted. When you wake up each morning remember to thank God for giving you another day. Always end the day with a positive thought. No matter how hard thing were, Tomorrow is a fresh opportunity to make it better. (unknown)
Re: [TMIC] Internal Thermometer
i know the feeling..pun intended From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Friday, January 25, 2013 12:30 PM Subject: [TMIC] Internal Thermometer Hello All, My internal thermometer is compromised by TM. I am constantly asking Dave to turn up the heat, or turn the heat down. Does anyone else have this problem? I can't stand it...it has the potential to cause problems in our marriage. Love you, Judy Michigan Dance like no one's watching, Sing like no one's listening, Love like you'll never be hurt, Play like there's no winners, Behave like mom's watching, Give like you have plenty, and Smile...(unknown
Re: [TMIC] Internal Thermometer
i think that is one of the things that is hard to deal with,although we all have a lot of the same going on we each have our own differences that are unique to us that cannot be matched in great numbers. just more broken glass to walk on From: Roger Terese Pratt r.c.pr...@frontier.com To: heyjude48...@aol.com heyjude48...@aol.com; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Friday, January 25, 2013 12:42 PM Subject: Re: [TMIC] Internal Thermometer This was more of a problem when I first was attacked by TM, but I still have decreased sense of hot and cold on my right side. One thing that has been a mystery to me is that I now seem to sweat a lot with any increase in activity. Why this is strange is because when I first got TM I didn't sweat any below where my TM hit (C2 - C4 in my neck). Then I started sweating a lot just on my head and then it progressed slowly down over the next 10 to 15 years. Weird, huh? - Roger in Kennewick, WA From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Friday, January 25, 2013 9:30 AM Subject: [TMIC] Internal Thermometer Hello All, My internal thermometer is compromised by TM. I am constantly asking Dave to turn up the heat, or turn the heat down. Does anyone else have this problem? I can't stand it...it has the potential to cause problems in our marriage. Love you, Judy Michigan Dance like no one's watching, Sing like no one's listening, Love like you'll never be hurt, Play like there's no winners, Behave like mom's watching, Give like you have plenty, and Smile...(unknown
Re: [TMIC] Internal Thermometer
im thankful for the ability to sometimes,,most times look at things and find some humor in it. if nothing is wrong it is rather humorous,if something is wrong it seams to make it less painful. funny how laughter can change things a little and sometimes a little is a lot. From: Roger Terese Pratt r.c.pr...@frontier.com To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Friday, January 25, 2013 12:43 PM Subject: Re: [TMIC] Internal Thermometer John, I love your sense of humor! - Roger in Kennewick, WA From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Friday, January 25, 2013 9:32 AM Subject: Re: [TMIC] Internal Thermometer i know the feeling..pun intended From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Friday, January 25, 2013 12:30 PM Subject: [TMIC] Internal Thermometer Hello All, My internal thermometer is compromised by TM. I am constantly asking Dave to turn up the heat, or turn the heat down. Does anyone else have this problem? I can't stand it...it has the potential to cause problems in our marriage. Love you, Judy Michigan Dance like no one's watching, Sing like no one's listening, Love like you'll never be hurt, Play like there's no winners, Behave like mom's watching, Give like you have plenty, and Smile...(unknown
Re: [TMIC] Re: Subscribe
i wollowed with why and how and the thought came to me,,it doesnt matter how or why if i knew,,it would still hurt. From: Robert Pall robthe...@aol.com To: heyjude48...@aol.com; i.whidd...@sky.com Cc: tmic-list@eskimo.com Sent: Wednesday, January 23, 2013 1:56 PM Subject: Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...butnone of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: Subscribe Thanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is pertinent toTM? Love you, Jude In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time, i.whidd...@sky.com writes: Hi Jude I've always wondered if I somehow snuk in under the radar of TMIC. When I was diagnosed with TM 3 1/2 yrs ago it was all new and very frightening and I had very little help or info from the doctors. While looking for help on the Internet, I was lucky enough to find the group and finally began to understand what had happened but, like most us, not why it had happened! So, thanks for taking on board what seems to be a lone voice from the UK and for all the kind words of encouragement and advice. Just to be sure I am a proper member, my details are:- Iris Whiddett 98 Eastwood Road Rayleigh Essex England Tel: 01268 771642 Regards Iris UK
Re: [TMIC] Need your input
i had the flu shot and the pneumonia shot 1st week in december and never got any worse for TM and so far havent had the flu i have taken the shots every year,,wellmmthe flu one, my neuro never gave any opinion on either other than if you want them get them. From: Pat Cooley patticoole...@gmail.com To: Betty Clark xbeecla...@gmail.com Cc: heyjude48...@aol.com; samm...@fidmail.com; ginnahamil...@yahoo.com; k...@col.gen.nz; xring...@mwt.net; snow121...@hotmail.com; grace...@gmail.com; w2sm...@aol.com; r...@aol.com; thenavigato...@aol.com; tmic-list@eskimo.com Sent: Monday, January 21, 2013 8:34 PM Subject: Re: [TMIC] Need your input Betty I have the same home situation. I never get the shot, but my hubby, both my daughters. my 2 son-in-laws and 2 grand daughters get the shot. Since I don't go out much at this time ofl the year - too damn cold - I feel I am safe. Even before TM, I never had colds. Patti C in Wisconsin On Mon, Jan 21, 2013 at 1:28 PM, Betty Clark xbeecla...@gmail.com wrote: My neuro feels my primary can cover my meds needs regularly so unless a new problem or question arises, there's no need for me to pay a specialist just to say, Okay, you're doing fine, see you next year, since I already see my primary every 1-2 years anyway. He also recommended I not get any vaccinations - but I think there are additional considerations to make... I have no small children or grandchildren (little germ critters, lol) and I live in the very mild climate area just north of San Francisco, California. In the 6 and a half years I've had TM, I've only had two colds and never had the flu (knock on wood!). Even though my daughter, who is 21 and still lives at home, just recovered from a pretty awful case of the flu, no one else in the house got it (me, my husband or my 23-yr-old son). Besides which, my understanding is there are many different strains of flu out there and the shot does not cover them all. There's no guarantee, even if you get the shot, you won't get the flu. Maybe the mega doses I take of vitamins B-12, C and D3 help, I don't know. But I'm more comfortable risking the flu than another TM incident. Betty (in Northern California) On 1/21/2013 9:05 AM, Pat Cooley wrote: Jude since everyone with TM suffers in different ways, I believe the decision to have a flu shot should be an individual one. I have had 2 different neuros and they both recommend that I don't have any shots in the future, so I haven't and will not have one in the future. I mentioned that I have had 2 different neuros. The first is from when I was first dx with TM, and now the second because we moved too far away from the first. It has been 2 yrs since I last saw my current neuro as she said I did not need any more MRI's as I have had at least 5 since TM. Also I did not need to make any appt unless things changed or have different symptoms which they haven't. Patti C. - Wisconsin On Mon, Jan 21, 2013 at 10:53 AM, heyjude48...@aol.com wrote: Hi ladies and gentleman, This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them. There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of. I miss hearing from you and hope you write in soon. In case you have forgotten the site it is: tmic-list@eskimo.com . If you need to receive the emails the address is: tmic-list-requ...@eskimo.com I love you all, Jude Michigan, USA
Re: [TMIC] Pain management
thats hard to swollow Rob. back in the 70's was the last time i purchased an OZ and it was 40 bucks an oz for the good stuff. From: fr...@franksheldon.com fr...@franksheldon.com To: Robert Pall robthe...@aol.com; tmic-list@eskimo.com Sent: Sunday, January 20, 2013 10:05 AM Subject: Re: [TMIC] Pain management I have been prescribed 2 oz of pot per month ...the problem is that the legal pot is $450 per oz. But I do agree that pot truly helps!!! Rob in NJ Sativex is sprayed under my tongue. I use it two or three times a day, with little euphoria. It's a legal prescription drug, in Canada and soon to be here in the U.S. Take Care F.
Re: [TMIC] Pain management doctor
same for me with the baclofen. From: heyjude48...@aol.com heyjude48...@aol.com To: a-ry...@comcast.net; pjv1...@chartermi.net Cc: tmic-list@eskimo.com Sent: Sunday, January 20, 2013 12:56 PM Subject: Re: [TMIC] Pain management doctor Alton, Don't you have pain? What does the Baclofen do for you? I believe I take it for spasms. Are you taking it for the same thing? If I don't take it my right leg flies out of the bed and if we go out, we have to strap my legs into my chair because my feet won't stay on the foot pedals. Love you, Jude Michigan In a message dated 1/20/2013 9:29:18 A.M. Eastern Standard Time, a-ry...@comcast.net writes: I get my intrathecal Baclofen pump refilled by Dr Hyatt at the Pain Clinic at CMC in Manchester, NH. I do not get treated for pain. Alton - Original Message - From: Pat Voorheis pjv1...@chartermi.net To: tmic tmic-list@eskimo.com Sent: Sat, 19 Jan 2013 01:21:21 - (UTC) Subject: [TMIC] Pain management doctor Please tell more about pain management doctors and clinics. Anything would be helpful and good to know. Sent from my iPad
Re: [TMIC] Pain management
a couple of years ago it didnt help me but it does nowodd From: Robert Pall robthe...@aol.com To: fr...@franksheldon.com; heyjude48...@aol.com; pjv1...@chartermi.net Cc: tmic-list@eskimo.com Sent: Saturday, January 19, 2013 7:42 PM Subject: Re: [TMIC] Pain management I have been prescribed 2 oz of pot per month ...the problem is that the legal pot is $450 per oz. But I do agree that pot truly helps!!! Rob in NJ -Original Message- From: frank fr...@franksheldon.com To: Heyjude48458 heyjude48...@aol.com; pjv1234 pjv1...@chartermi.net Cc: tmic-list tmic-list@eskimo.com Sent: Sat, Jan 19, 2013 2:32 pm Subject: Re: [TMIC] Pain management Hey, Pumps don't allways work. Don't let them talk you out of pain. Consider Cannabis, or Sativex if you live in Canabis Try things Frank Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses self hypnosis/meditation.
Re: [TMIC] Fwd: Senior Citizens will smile
amazing and i thought it was just me ;) From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Saturday, January 19, 2013 11:35 PM Subject: [TMIC] Fwd: Senior Citizens will smile This was sent to me from a good friend, I hope you enjoy it. Jude in Michigan From: ccraterl...@aol.com To: bod...@aol.com, clhack...@att.net, gmrlsm...@yahoo.com, honda...@att.net, heyjude48...@aol.com, jwally...@att.net, vickiekess...@aol.com, lbi...@sbcglobal.net, deedeex...@hotmail.com, michelestja...@gmail.com, s...@toast2.net, vsell...@bellsouth.net Sent: 1/19/2013 8:42:22 P.M. Eastern Standard Time Subj: Senior Citizens will smile THIS IS US!!! Senior citizens are constantly being criticized for every conceivable deficiency of the modern world, real or imaginary. We know we take responsibility for all we have done and do not blame others. HOWEVER, upon reflection, we would like to point out that it wasNOT the senior citizens who took The melodyout of music, The prideout of appearance, The courtesyout of driving, The romanceout of love, The commitmentout of marriage, The responsibilityout of parenthood, The togethernessout of family, The learningout of education, The serviceout of patriotism, The Golden Rulefrom rulers, The nativityscene out of cities, The civilityout of behavior, The refinementout of language, The dedicationout of employment, The prudenceout of spending, The ambitionout of achievement or Godout of government and school. And we certainly areNOT the ones who eliminated patience and tolerancefrom personal relationships and interactions with others!! And, we do understand the meaning of patriotism, and remember those who have fought and died for our country. Just look at the Seniors with tears in their eyes and pride in their hearts as they stand at attention with their hand over their hearts! YES, I'M A SENIOR CITIZEN! I'm the life of the party. Even if it lasts until 8 p.m. I'm very good at opening childproof caps. With a hammer. I'm awake many hours before my body allows me to get up. I'm smiling all the time because I can't hear a thing you're saying. I'm sure everything I can't find is in a safe secure place, somewhere. I'm wrinkled, saggy, lumpy, and that's just my left leg. I'm beginning to realize that aging is not for wimps. Yes, I'm a SENIOR CITIZEN and I think I am having the time of my life! Now if I could only remember who sent this to me, I wouldn't send it back to them, but I would send it to some of my 'senior' friends!! Spread the laughter Share the cheer Let's be happy While we're here. And, MAYGOD BLESSAMERICA AND MAY AMERICABLESSGOD!! Go Green- Recycle CONGRESS!!
Re: [TMIC] neurologist
i reckon he forgot about the part of the body decaying and the spirit renewed day by day people kill me,,,glad i aint one...lol From: heyjude48...@aol.com heyjude48...@aol.com To: j.d...@shaw.ca Cc: tmic-list@eskimo.com Sent: Friday, January 18, 2013 1:07 PM Subject: Re: [TMIC] neurologist Janet, I would have given the doctor the finger! And told him how ridiculous he sounded. Jude In a message dated 1/18/2013 11:03:22 A.M. Eastern Standard Time, j.d...@shaw.ca writes: The last neuro that I went to told me that when you are not living a good life, then God will afflict you. When you straighten up your life and live the way you are supposed to, a way that is pleasing to God, then He will stop the affliction. He told me to go home and be grateful that my affliction has not caused more damage, and that God has allowed me to get to where I am. geesh, thanks buddy. Janet On 17/01/2013 9:50 PM, Janice Nichols wrote: I have not been to my neuro in at least 4 years. My family doctor and Pain Management doctors take care of me far better than my neuro. Once I was out of the hospital for a year or two we quit going to him because he just did not do anything except ask how I was doing and then that was it. Pain Management doc’s do so much more! Janice From: heyjude48...@aol.com Sent: Thursday, January 17, 2013 5:38 PM To: el...@att.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] neurologist
Re: [TMIC] neurologist
i realize that a lot of peole dont adhear to dispensationalism but if we look at the bible through the instructions that it gives us then it is its own best commentary.to whome is it written and what is the precept spoken of. From: Barbara H. barbara...@gmail.com To: heyjude48...@aol.com Cc: tmic-list@eskimo.com Sent: Friday, January 18, 2013 2:21 PM Subject: Re: [TMIC] neurologist I think we do so by praying as we read, for God to help us understand, then by reading verses in context rather than stringing isolated verses together. The church I went to as a teenager strongly advocated reading the Bible through, and that has been the biggest help to me. There are seeming opposites in the Bible that hold each other in balance, and a lot of error comes in when people tip one way or the other. Barbara H. On Fri, Jan 18, 2013 at 1:01 PM, heyjude48...@aol.com wrote: Janet, I hope you ran out of that neurologists office really fast! And, I assume you never went back. Barbarah, You are right too. That's why I find the Bible so confusing. How is one supposed to figure out how to discover it without misconstruing the meaning? Jude in Michigan In a message dated 1/18/2013 11:27:09 A.M. Eastern Standard Time, barbara...@gmail.com writes: That is maddeningly ridiculous and sounds more like the idea of karma. Job was afflicted even though God Himself said he had done nothing wrong. In John 9:1-4 it says, As [Jesus] passed by, he saw a man blind from birth. And his disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, 'It was not that this man sinned, or his parents, but that the works of God might be displayed in him.' I once wrote up an extensive list of reasons the Bible gives for suffering: http://barbarah.wordpress.com/2007/07/16/scriptural-reasons-for-suffering/ Barbara H. On Fri, Jan 18, 2013 at 11:03 AM, Janet Dunn j.d...@shaw.ca wrote: The last neuro that I went to told me that when you are not living a good life, then God will afflict you. When you straighten up your life and live the way you are supposed to, a way that is pleasing to God, then He will stop the affliction. He told me to go home and be grateful that my affliction has not caused more damage, and that God has allowed me to get to where I am. geesh, thanks buddy. Janet
Re: [TMIC] Face book
as far as going to the neuro unless there are circumstances that would cause you to have to have help 6 month visits are normal.theres not much they can do anyway.managment of symptoms can be done by primary care after you find out what works best From: Linda Egli le...@sbcglobal.net To: Butcher, Bernie (SFS) bernie.butc...@honeywell.com Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 3:35 PM Subject: Re: [TMIC] Face book I was offered Copaxone by my neurologist about 2 years ago. He had a study showing the drug could prevent TM from progressing to MS. However the study was by the manufacturer of Copaxone so I declined to take it. One question - when saw my neurologist Dec, 2011, I was told he no longer needed to see me unless there was a problem. Is this normal not to be followed at least yearly? I do see my Primary care doctor 3-4 times a year. From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com To: Linda Egli le...@sbcglobal.net; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 10:54 AM Subject: RE: [TMIC] Face book I agree. I was diagnosed with TM in 2002 and MS in 2008. I think it was MS all along. I stopped getting the flu shot in 2002, and no flu. (just lucky I guess). I had a transplant in 1993, and my immune system is knocked down by the anti-rejection meds. My doc and my neuro say to get the shot, but I don’t. it’s my belief that they just don’t know, they don’t really know what causes TM, they don’t know what causes MS, and they don’t really know what effect the flu shot has with my condition. So, I’ll take my chances. I’m taking Copaxone injections for MS. BERNARD BUTCHER Honeywell Engineering 516-577-5868 From:Linda Egli [mailto:le...@sbcglobal.net] Sent: Tuesday, January 15, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Face book I have had TM for 9 years , was told by my neurologist to never get another flu shot or any other type of immunization (ex: tetanus or chicken pox). He thought the flu shot was what precipitated my TM. I worry about catching the flu, but everyone knows not to come around me if they have any type of illness. I also pretty much stay at home avoid crowds in the winter, so far no flu. I agree with Gary. I got a bad cold a few months ago it about did me in. I can't imagine what the flu would do. I miss the old group on TM, but I just don't trust Facebook. The TMIC list is my contact with other TMers. Nice to see some conversation on this site. Linda E. in East Texas From:Gary Thomas gbthomas8...@sbcglobal.net To:Transverse Myelitis list tmic-list@eskimo.com Sent:Tuesday, January 15, 2013 8:25 AM Subject:Re: [TMIC] Face book I used to get flu shots but stopped after getting TM in 2004. I have not had the flu.until this season! I got it at around Christmas and am still not up to full strength (which is not that great anyway due to the fatigue I already had from the TM). So, I am rethinking, should I get the shot next year, or not? Fortunately, I did not pass the flu to my 87-year-old dad who always gets the shot but forgot this time, or my pregnant daughter and her family visiting us while I was sick, or my wife who has not gotten the shot either. I think her chiropractor is not for getting it. I don't think my doctor or neurologist had anything against getting the shot. I guess I'll have a year to think about it??? The worst part about the flu was that my grandkids were here from Georgia and I did not get to do much with them. Gary in Niles, MI - Original Message - From:Robert Pall To:jcs...@yahoo.com ; tmic-list@eskimo.com Sent:Tuesday, January 15, 2013 8:11 AM Subject:Re: [TMIC] Face book I get the Flu and Pneumonia shot and have never gotten the flu in the past 15 years. And The TMIC_LIST is pretty much the only one I read...it is too bad that so many of our group has gone to facebook...I guess you can't stop progress!~ Rob in New Jersey -Original Message- From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Mon, Jan 14, 2013 10:59 pm Subject: Re: [TMIC] Face book i had the flu shot and the pneumonia shot the same time and i still cant play the violin! From:Dalton Garis malugss...@gmail.com To: Pat Cooley patticoole...@gmail.com; pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Monday, January 14, 2013 9:31 PM Subject: Re: [TMIC] Face book I still listen and read. Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them every 10 days or so. DG Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Pat Cooley patticoole...@gmail.com Date: Monday, 14 January 2013 8:33 PM To: pjv1
Re: [TMIC] Face book
i had the flu shot and the pneumonia shot the same time and i still cant play the violin! From: Dalton Garis malugss...@gmail.com To: Pat Cooley patticoole...@gmail.com; pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Monday, January 14, 2013 9:31 PM Subject: Re: [TMIC] Face book I still listen and read. Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them every 10 days or so. DG Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Pat Cooley patticoole...@gmail.com Date: Monday, 14 January 2013 8:33 PM To: pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Subject: Re: [TMIC] Face book Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 14 Jan 2013 17:33:21 -0800 Patti I think you made the right decision. You have to do what is best for you and your family. You need to protect your mom, hubby grandchildren. Patti C. in Wisconsin On Mon, Jan 14, 2013 at 5:39 PM, pjv1...@chartermi.net wrote: I've noticed some talk of people comng back to the tmic list for discussions and wondered just how many people actually look at this site anymore. The onky discussion I have is that I received my first flu shot last Wednesday since my 9 years with TM. We had two deaths from the flu in our area and I had a fear of carrying the flu to my 86 year old Mom, my diabetic hubby, or my grandchildren. My fears of being a carrier outweighed my fear of a reaction. I called my Neurologist and asked if he had any objection to me getting the flu shot. His answer was go ahead and get it. Patti V - Michigan
Re: [TMIC] Merry Christmas from Judy Hoops
Gods Blessings to you and yours lady! From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, December 18, 2012 10:20 PM Subject: [TMIC] Merry Christmas from Judy Hoops AOL Email To My TM Family, Merry Christmas To All May the Lord bless you and make His face shine upon you and grant you peace... I hope that this finds you all well and in good spirits. It's been a long, long time since I have been in touch. I have no excuse, except that I have been spending a lot of time on Facebook. It is so easy to get caught up in all of the statements, comments, sharing, and posting that I let TMIC go by the wayside. Who is still posting here? How have you been? What have you been up to and where have you been lately? What have the latest TMIC topics been? What are you posting about now? I have been nursing a leg that is fractured above the knee. The bones are infected and necrotic so the only option I face is having it amputated. The surgery is scheduled for January 18th. It will be a long, drawn out surgery of 8 hours or more. I will be in the hospital for about a week, and after will have a 4-5 week nursing home stay. So, Dave and I are planning on a quiet Christmas and unless people come to us, will spend the day by ourselves. One of my nieces and her family lives within driving distance so maybe we will see them. Usually, we travel to see them. It will be interesting to see if they make the trip our way. So much for now, Love Hugs, Judy Hoops, in MI.
Re: [TMIC] Yesterday
still hurts! lol hope yours was wonderful! From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Friday, November 23, 2012 10:20 AM Subject: [TMIC] Yesterday AOL Email I hope you all had a happy and fun-filled Thanksgiving. I missed you all at my table. The food was so-o-o-o good! Now it's time for left-overs. Mmm, good sand- witches..Oh, that's Halloween Love, Judy
Re: [TMIC] HI
what they said! From: Janice Nichols jan...@centurytel.net To: celr...@aol.com; TMIC-LIST@eskimo.com Sent: Wednesday, November 21, 2012 4:48 PM Subject: Re: [TMIC] HI and Happy Thanksgiving to everyone of my TM friends Janice From: celr...@aol.com Sent: Wednesday, November 21, 2012 8:38 AM To: TMIC-LIST@eskimo.com Subject: [TMIC] HI HAPPY THANKSGIVING TO EVERYONE.
Re: [TMIC] OT Chris
who can know your pain but you metaphorically we stand with you! we quietly stand with you and love you... From: Janice Nichols jan...@centurytel.net To: celr...@aol.com; TMIC-LIST@eskimo.com Sent: Saturday, October 6, 2012 7:30 PM Subject: Re: [TMIC] OT Chris Jane, I can’t imagine the pain you are in. You certainly have my prayers. Janice From: celr...@aol.com Sent: Saturday, October 06, 2012 5:29 PM To: TMIC-LIST@eskimo.com Subject: [TMIC] OT Chris It has been 1 year today that my son Chris died. It is hard today. I miss him so much. Prayer needed please. I just had to write this. Jane Elrod
Re: [TMIC] tm and the lungs
makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
i would suppose each individual case is just that,though we that have had TM suffer a lot of the same symptoms,each individual case will have associated problems in the body that TM may or may not have caused but definitely contributes to. It would be foolish for me to say no way to anything anyone suffers from,,unless of course I am suffering the same. when i worked with computer files i had a fit with association files. one file would tie its self to another and at first glance there would be no reasonable reason for it and if you delete one file that was associated with another ,the other may not work properly and thus render its root useless. the body works in much the same way yet individualizes much much more. my files may not associate the same way your files associate. thats a mouthful,,,dont try repeating itmay cause you to crash!,,lol From: Cody c...@austin.rr.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Thursday, August 30, 2012 2:36 PM Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] try this
this is good news!
and found this out as far as a definition of one of the nice things we suffer
with:
Clonus (from the Greek for violent, confused motion) is a series of
involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign
of certainneurological conditions, particularly associated with upper motor
neuron lesions involving descending motor pathways, and in many cases is,
accompanied by spasticity (another form of hyperexcitability).[1] Unlike small,
spontaneous twitches known as fasciculations (usually caused by lower motor
neuronpathology), clonus causes large motions that are usually initiated by
a reflex. Studies have shown clonus beat frequency to range from 3- 8 Hz
(Hertz) on average, and may last a few seconds to several minutes depending on
the patient’s condition.[1]
(i called it the jerks)
{º¿º}
~
From: Janice Nichols jan...@centurytel.net
To: Bridget Skinner ibridg...@gmail.com; tmic-list@eskimo.com;
msersl...@yahoogroups.com
Sent: Friday, July 27, 2012 12:04 PM
Subject: Re: [TMIC] try this
Guys, this is really encouraging!! I am
going to try it too.
Janice
From: Bridget Skinner
Sent: Friday, July 27, 2012 10:07 AM
To: tmic-list@eskimo.com ; msersl...@yahoogroups.com
Subject: Re: [TMIC] try this
Sorry
I twitched and hit the send button too early. Anyway, it didn't bother me at
all. I used it knees to toes. Made all the difference in the world. When I have
taken my baclofen and still hurt this is the way to go. You would think
morphine and norco would take care of these sensations but they take care of
other types of pain - not spastisity or nerve pain. Thank you for the tip. It's
nice to use something that I can pick up something at the store that really
works and I don't need to see a doc first.
On Fri, Jul 27, 2012 at 8:26 AM, Bridget Skinner ibridg...@gmail.com wrote:
I believe I didn't send this to the whole group when I replied. And if I did,
I apologize for sending it again.
I was concerned about using the Aspercreme Heat Pain Relieving Gel because of
my inability to feel heat but my husband had a good idea -- just try it on one
little spot and if it bothers me than its an easy wipe off. Well it didn't
---
I take 80mg a day of Baclofen and still have problems although it REALLY
helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I
would just get used to what it isn't taking care of. Went to CVS this evening
and purchased the Fast Acting Therapy Aspercreme Heat Pain Relieving Gel
Hopefully this is the right kind. (little nervous since I can't feel heat) But
I am so excited to see if this works. I will use it tonight and let y'all
know how it worked for me.
Please, if anyone has tried it and has problems with topical pain or the
inability to feel heat let me know if it makes a difference.
THANK YOU
Forwarded conversation
Subject: [TMIC] try this
From: jeff bernier jeffsmokeea...@yahoo.com
Date: Thu, Jul 26,
2012 at 10:16 AM
To: tmic-list@eskimo.com, msersl...@yahoogroups.com
for those of you with problems with spastisity heres a trick i learned.i have
a baclofen pump and take 5 mg clonipin daily and still get spasms in my
legs.i have found that aspercream hot for arthritis works outstanding,i had
heard this from another person with ms and it worked.
--
From: john snodgrass jcs...@yahoo.com
Date: Thu, Jul 26, 2012 at
10:28 AM
To: tmic-list@eskimo.com tmic-list@eskimo.com
i had heard of using hot muscle rub but never tried it but i might now.
thanks Jeff
From: jeff bernier jeffsmokeea...@yahoo.com
To: tmic-list@eskimo.com; msersl...@yahoogroups.com
Sent: Thursday, July 26, 2012 11:16 AM
Subject: [TMIC] try this
for those of you with problems with spastisity heres a trick i learned.i have
a baclofen pump and take 5 mg clonipin daily and still get spasms in my
legs.i have found that aspercream hot for arthritis works outstanding,i had
heard this from another person with ms and it worked.
--
From: Janice Nichols jan...@centurytel.net
Date: Thu, Jul 26, 2012
at 10:32 AM
To: jeff bernier jeffsmokeea...@yahoo.com, tmic-list@eskimo.com,
msersl...@yahoogroups.com
Thanks. I take baclofen and it works most every nite, but then I have the
occasional problem nite. Will try aspercream.
Janice
From: jeff bernier
Sent: Thursday, July 26, 2012 10:16 AM
To: tmic-list@eskimo.com ; msersl...@yahoogroups.com
Subject: [TMIC] try this
for those of you with problems with spastisity heres a trick i learned.i have
a baclofen pump and take 5 mg clonipin daily and still get spasms in my
legs.i have found that aspercream hot for arthritis works outstanding,i had
heard this from another person with ms and it worked.
--
From: em...@telephonelady.com
Date: Thu
Re: [TMIC] try this
i had heard of using hot muscle rub but never tried it but i might now. thanks Jeff From: jeff bernier jeffsmokeea...@yahoo.com To: tmic-list@eskimo.com; msersl...@yahoogroups.com Sent: Thursday, July 26, 2012 11:16 AM Subject: [TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked.
Re: [TMIC] Provigil
it is good to see the different ways this has worked in that we may try more than one way to see what fits From: fr...@franksheldon.com fr...@franksheldon.com To: Lori Biehler lbieh...@earthlink.net; rasbu...@roadrunner.com; john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Friday, July 20, 2012 10:09 AM Subject: [TMIC] Provigil Greetings from Frenchman's Bay, Maine, I have used Provigil for a long time. At first I took it everyday, But then, after two or three years, I started having weird dreams, feeling depressed, feeling as if I'd had too much coffee. So, I stopped the Provigil, and began going to sleep right after supper. Some days I'd want to go to sleep before supper even though I'd had a one and a half hour nap in the early afternoon, But my dreams went back to normal, depression gone, I began to feel normal As in normal TM patient. So, now I use Provigil only when going out in the evening. I take the provigil right after my afternoon nap. Take Care Frank
Re: [TMIC] Re: Provigil for TM?
From: Dalton Garis malugss...@gmail.com To: bobberino elbobber...@earthlink.net; Cindy McLeroy cindymcle...@socal.rr.com; Susan Kleinz skle...@cox.net; celr...@aol.com Cc: tmic-l...@eskimo.net Sent: Thursday, July 19, 2012 10:32 AM Subject: [TMIC] Re: Provigil for TM? Fellow sufferers; Have any of you heard of Provigil? Used for narcolepsy, it has found use by MS patients to counter the extreme fatigue common with MS; and our situation is often similar in some respects. I get this fatigue, sometimes so bad that I stumble from lunch, slurring my speech, and collapse on anything available and must be carried to a bed. Would Provigil be useful?? Who has heard of this med? Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047
Re: [TMIC] Re: Provigil for TM?
i seen it on tv but haven't heard of any of our sort using it From: john snodgrass jcs...@yahoo.com To: tmic-l...@eskimo.net tmic-l...@eskimo.net Sent: Thursday, July 19, 2012 10:48 AM Subject: Re: [TMIC] Re: Provigil for TM? From: Dalton Garis malugss...@gmail.com To: bobberino elbobber...@earthlink.net; Cindy McLeroy cindymcle...@socal.rr.com; Susan Kleinz skle...@cox.net; celr...@aol.com Cc: tmic-l...@eskimo.net Sent: Thursday, July 19, 2012 10:32 AM Subject: [TMIC] Re: Provigil for TM? Fellow sufferers; Have any of you heard of Provigil? Used for narcolepsy, it has found use by MS patients to counter the extreme fatigue common with MS; and our situation is often similar in some respects. I get this fatigue, sometimes so bad that I stumble from lunch, slurring my speech, and collapse on anything available and must be carried to a bed. Would Provigil be useful?? Who has heard of this med? Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047
Re: [TMIC] RE: Provigil for TM?
thats that one that takes a while to get into your system isnt it? From: Harlow, Diane diane.har...@maritz.com To: Dalton Garis malugss...@gmail.com; bobberino elbobber...@earthlink.net; Cindy McLeroy cindymcle...@socal.rr.com; Susan Kleinz skle...@cox.net; celr...@aol.com celr...@aol.com Cc: tmic-l...@eskimo.net tmic-l...@eskimo.net Sent: Thursday, July 19, 2012 10:37 AM Subject: [TMIC] RE: Provigil for TM? Hi - I am new to the group. Diagnosed with TM in 2010 and struggle with extreme fatigue. I have used Provigil and Nuvigil for the last year. The medication gives me a better quality of life. I still have fatigue, but it does help me make it through the day. The only struggle I have had is with insurance. They are very hesitant to pay, because it is a very expensive medication. I finally got it approved, but it took a while. Good luck From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Thursday, July 19, 2012 9:32 AM To: bobberino; Cindy McLeroy; Susan Kleinz; celr...@aol.com Cc: tmic-l...@eskimo.net Subject: [TMIC] Re: Provigil for TM? Fellow sufferers; Have any of you heard of Provigil? Used for narcolepsy, it has found use by MS patients to counter the extreme fatigue common with MS; and our situation is often similar in some respects. I get this fatigue, sometimes so bad that I stumble from lunch, slurring my speech, and collapse on anything available and must be carried to a bed. Would Provigil be useful?? Who has heard of this med? Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047 Confidentiality Warning: This e-mail contains information intended only for the use of the individual or entity named above. If the reader of this e-mail is not the intended recipient or the employee or agent responsible for delivering it to the intended recipient, any dissemination, publication or copying of this e-mail is strictly prohibited. The sender does not accept any responsibility for any loss, disruption or damage to your data or computer system that may occur while using data contained in, or transmitted with, this e-mail.If you have received this e-mail in error, please immediately notify us by return e-mail. Thank you.
Re: [TMIC] Provigil
i reckon medicine is personality driven.some take little,some take none,others take a boat load function dictates. From: Regina Rummel regina...@sbcglobal.net To: tmic-list@eskimo.com Sent: Thursday, July 19, 2012 10:52 AM Subject: [TMIC] Provigil Provigil never worked for me.
Re: [TMIC] have any of you ever heard of this
reminds me of my daily thought,,,tomorrow will be better...look forward to that day. and im talking about this side of the dirt! From: Robert Pall robthe...@aol.com To: jeffsmokeea...@yahoo.com; tmic-list@eskimo.com; msersl...@yahoogroups.com Sent: Thursday, June 28, 2012 12:07 PM Subject: Re: [TMIC] have any of you ever heard of this I have never heard anything like this beforebut wouldn't it be wonderful if it happened! Rob in NJ -Original Message- From: jeff bernier jeffsmokeea...@yahoo.com To: tmic-list tmic-list@eskimo.com; MSersLife msersl...@yahoogroups.com Sent: Thu, Jun 28, 2012 11:32 am Subject: [TMIC] have any of you ever heard of this i have been hearing alot of stories and even know someone who experienced this.i heard of a woman who was dx with ms 20 years ago and spent a vast majority of this time in a wheelchair and suffered through all crazy stuff we do,tingling,numbness,muscle spasms,bladder issues(etc.etc).she woke up one morning and put her legs over the side of the bed stood up and walked and had no symptoms at all ,other than some muscle weakness which therapy took care of,she is symptom free and is living a normal life like nothing ever happened. jeff tm2000,ms2005
Re: [TMIC] 13 years tm
walking the dog. made me laugh. yesterday the Boxer needed to go outside and i was going to be the one to take hem. well after several attempts i handed the job over to the grandson for the dog was taking me instead of me him...lol From: Pat Cooley patticoole...@gmail.com To: Robert Pall robthe...@aol.com Cc: deer...@aol.com; tmic-list@eskimo.com Sent: Wednesday, June 27, 2012 11:56 AM Subject: Re: [TMIC] 13 years tm Robert you have a wonderful outlook. It has only been 4 yrs for me and I believe I have come as far as I will ever come. I can walk in the house unaided but need a cane when I go out. If you can walk your dog you must be doing pretty good. I do get depressed at times, but my family usually can pull me out of it. Right now the fatigue is what gets to me. Patti On Wed, Jun 27, 2012 at 10:49 AM, Robert Pall robthe...@aol.com wrote: It will be 15 years in September for me. I can honestly say that I have had little change in my condition over the past 14 years. I guess you become more adapt at handling TM after a number of years. I try to stay active (swimming every day for an hour). I even got a dog .a Golden Retriever who at six months is already dragging me off my feetbut at least it forces me to walk for at least an hour a day. I will be 65 in Sept and I realize I will be going through all of the conditions associated with getting older...but for as long as possible I will not let TM define who I am. Thinking back 15 years went by in an instant. better start living or start dying! All the best! Rob in NJ -Original Message- From: DeeRERE deer...@aol.com To: tmic-list tmic-list@eskimo.com Sent: Wed, Jun 27, 2012 11:10 am Subject: [TMIC] 13 years tm I HAVE HAD TM FOR 13 YEARS IN JULY. I AM PARALIZED FROM THE WAIST DOWN, MY ARMS AND HANDS HAVE PAIN EVERY DAY. WHEN I READ SOME LETTERS I THINK HOW LUCKY THEY ARE. I HAVE A GREAT HUSBAND THAT TAKES CARE OF ME. I AM BLESSED FOR HIM. BUT THIS TM IS SOMETHING I THOUGHT I COULD NOT LIVE WITH BUT IT HAS BEEN 13 YEARS. GOD BLESS EVERYONE. MARIE
Re: [TMIC] Looking for input.
if you have a family Doc,they could refer you for another opinion. there seams to be more going on here than meets the eye. hard to find a happy middle ground in neurological medicine,while one Doc will pit you to sleep another will let you scream with pain and anguish. never be satisfied,always pay attention to your body and if one mechanic you hired dont satisfy you with the repair procedure go to another garage. although we cant rid ourselves of all discomfort,,some things indicate further immediate attention! don't waitget on the phone! Your the boss! From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com; john snodgrass jcs...@yahoo.com Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Tuesday, June 26, 2012 8:46 AM Subject: Re: [TMIC] Looking for input. Bridget, Are you sure you can’t get into the doc until August? Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica. I am back on Neurontin after trying Lyrica. Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem. The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon. You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures. I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after
Re: [TMIC] Looking for input.
thats right Dalton. it would be terrible if we had nobody like us to talk to because everyone else seams to just not understand From: Dalton Garis malugss...@gmail.com To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Monday, June 25, 2012 10:59 PM Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
it is frustrating to say the least,,,your thinking,,im going to do this,,and then you move and your body begins to dictate otherwise to the point you say in going to do nothing.that heade thrashing scares me though...might jerk it into something!,,,ive done my legs that way and it left a mark From: Bridget Skinner ibridg...@gmail.com To: john snodgrass jcs...@yahoo.com Cc: Janice Nichols jan...@centurytel.net; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Monday, June 25, 2012 10:32 PM Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.net wrote: I would start with Baclofen first - I think it works great. You need to take all through the day, morning, noon and night. It really does help a lot. Janice From
Re: [TMIC] Looking for input.
Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
wont leave home without it...lol From: Janice Nichols jan...@centurytel.net To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 2:25 PM Subject: Re: [TMIC] Looking for input. Janet, one more thought. Do you take Baclofen for spasms? Really works great for me as long as I take it 3 times a day. Janice From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC]
for me when i have to have a bowel movement my side hurts worse and the buzzing in my legs gets worse From: Roger Terese Pratt r.c.pr...@frontier.com To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Sent: Wednesday, May 23, 2012 10:14 AM Subject: Re: [TMIC] I wish this was only a female problem. I've had TM for 18 years. I used to have to take pills just to be able to go, and although I have gotten enough better not to have to take the pills, not having my bladder work right still continues to be a problem. TM has also terminated my sexual function (which is a whole nother story). It is my opinion that once the nerves are damaged, full recovery may never happen. - Roger in Kennewick, WA - Original Message - From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Wednesday, May 23, 2012 12:45:29 AM Subject: [TMIC] Hi TM’ers, This question probably pertains mostly to female TM’ers, but maybe not. Is it my imagination or have you all noticed that spasms increase from the waist down, legs included, when the bladder is saying it is time to go to the bathroom? I have changed the wording several times to make it say what I am trying to ask. Hope you get my meaning. Also, have any of you gotten consistent improvement in bladder control or have you pretty much leveled out as far as improvement is concerned. If you keep improving, please give me the length of time you have had TM. I have had TM for 5 years and seem to go back and forth, sometimes 2-3 weeks at a time, waking up with wet pads and then, for a while, fairly dry (but never completely). It doesn’t seem to matter how much I drink during the day or in the evening. When I was in the hospital, the doc’s kept talking about my bladder needing time to “wake up” after being paralyzed. Well, mine seems to wake up a little and then snoozes again. Frustrating. Janice
Re: [TMIC] cancer vs tm
yes,, there's a bunch of us that know all to well just what you are saying. this day was and is a bull! From: rn11...@yahoo.com rn11...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Saturday, May 5, 2012 4:49 PM Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
i have become use to baclofen,neuronton,atavan,hydrocodone,and a pill for depression. i hurt a lot but if i dont take these pills i am rather suicidal. it is good to find something that helps but you still become accustom to it and have to press on with pain. I suppose thats why it is called pain management.it does not go away,,just manageable. press on my dear nurse friend,,,press on. From: Susan Kleinz skle...@cox.net To: rn11...@yahoo.com rn11...@yahoo.com Cc: tmic tmic-list@eskimo.com Sent: Saturday, May 5, 2012 7:46 PM Subject: Re: [TMIC] cancer vs tm no, you are not crazy. I have banding pain always. a few meds that might help... Savella - developed for fibromyalgia Baclofen - muscle relaxer Seratonin do you take any of these? Susan, Phx, AZ On May 5, 2012, at 1:49 PM, rn11...@yahoo.com wrote: Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] hi
lol,i cant even find my surprised look anymore... From: James Berg molokai...@gmail.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, April 25, 2012 4:46 PM Subject: Re: [TMIC] hi I'd be astounded if ths wasn't a scam On Sun, Apr 22, 2012 at 3:26 AM, Jan Hargrove jmh1...@sbcglobal.net wrote: wow can you look at this http://www.nbnews15.net/biz/?read=7741768 ~*Advertisement
Re: [TMIC] What hurts
reckon that be why i called it a pipe dream From: Pat Cooley patticoole...@gmail.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Tuesday, April 3, 2012 9:46 AM Subject: Re: [TMIC] What hurts John that sure sounds like a great idea. It will never happen as it is too simple a solution. Patti On Mon, Apr 2, 2012 at 12:34 PM, john snodgrass jcs...@yahoo.com wrote: our government wastes so much money on things that are not necessary. i have a pipe dream: it would be great if when people become ill and need assistance if they don't have the wherewithal to do what they need to do to make life bearable, if the government that is supposed to be for the people would say we can move you closer to like John or Kevin, or whoever where ever,,,they have a lot of help and can assist you with your needs how beautiful would that be! From: Kevin Wolfthal wolft...@optonline.net To: a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Monday, April 2, 2012 12:28 PM Subject: Re: [TMIC] What hurts Akua, I live in a big city. Even though there are some organizations that help the disabled, it seems the big push from social workers and even nurses, is that I should go on medicaid in order to get the most services. My Parents, (gone now), and I, worked hard for many years to have a little security and comfort. Going on Medicaid means divesting all of ones assets but for the bare minimum, and having the state own your soul. No thank you! So I own my own condo that I inherited, but I live in a building that offers the bare minimum of access, and the workers are hostile to me. I struggle to make ends meet on SSDI. I even received an anonymous handwritten threatening message a few months ago, which I have discussed with the police. Nothing they can do right now. My saving grace is my aide who cooks, cleans and shops for me 4 days a week. I would move to a more accessible and friendly place if I was not so physically depleted and could afford it. You are not alone in having to make the best of a difficult situation. There is no guarantee of sensitivity even from other disabled folks, though we hope that those in similar circumstances have more understanding, it's not always the case. This group has given more support than most I've found, but misunderstandings happen, as in most relationships. Hoping you find answers and help for your needs. Kevin a...@artfarm.com wrote: What hurts, Bernie, is the *Victim-blaming* implicit in the question why do you stay and whole passive agressive if you don't like it just go somewhere else it *pushes a button* in me, of other causes and other efforts where, when one protests ill treatment, one is told *to pack up and go* And the sad, bad part is EVEN IF I WANTED TO I CAn't but the worst part is, i*f i could, i would but if i could, then i wouldn't* *want or have to...* * * *if i could marshall the resources to move, i could marshall the resources* *to make it better, to fix it…* * * but that doesn't even get to the why should i be the one to leave my home that i worked so hard to get and give up my little yard and the trees i planted and all my tools and equipment? * * * * * *
Re: [TMIC] What hurts
our government wastes so much money on things that are not necessary. i have a pipe dream: it would be great if when people become ill and need assistance if they don't have the wherewithal to do what they need to do to make life bearable, if the government that is supposed to be for the people would say we can move you closer to like John or Kevin, or whoever where ever,,,they have a lot of help and can assist you with your needs how beautiful would that be! From: Kevin Wolfthal wolft...@optonline.net To: a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Monday, April 2, 2012 12:28 PM Subject: Re: [TMIC] What hurts Akua, I live in a big city. Even though there are some organizations that help the disabled, it seems the big push from social workers and even nurses, is that I should go on medicaid in order to get the most services. My Parents, (gone now), and I, worked hard for many years to have a little security and comfort. Going on Medicaid means divesting all of ones assets but for the bare minimum, and having the state own your soul. No thank you! So I own my own condo that I inherited, but I live in a building that offers the bare minimum of access, and the workers are hostile to me. I struggle to make ends meet on SSDI. I even received an anonymous handwritten threatening message a few months ago, which I have discussed with the police. Nothing they can do right now. My saving grace is my aide who cooks, cleans and shops for me 4 days a week. I would move to a more accessible and friendly place if I was not so physically depleted and could afford it. You are not alone in having to make the best of a difficult situation. There is no guarantee of sensitivity even from other disabled folks, though we hope that those in similar circumstances have more understanding, it's not always the case. This group has given more support than most I've found, but misunderstandings happen, as in most relationships. Hoping you find answers and help for your needs. Kevin a...@artfarm.com wrote: What hurts, Bernie, is the *Victim-blaming* implicit in the question why do you stay and whole passive agressive if you don't like it just go somewhere else it *pushes a button* in me, of other causes and other efforts where, when one protests ill treatment, one is told *to pack up and go* And the sad, bad part is EVEN IF I WANTED TO I CAn't but the worst part is, i*f i could, i would but if i could, then i wouldn't* *want or have to...* * * *if i could marshall the resources to move, i could marshall the resources* *to make it better, to fix it…* * * but that doesn't even get to the why should i be the one to leave my home that i worked so hard to get and give up my little yard and the trees i planted and all my tools and equipment? * * * * * *
Re: [TMIC] Blown Away
From: john snodgrass jcs...@yahoo.com To: a...@artfarm.com a...@artfarm.com Sent: Monday, April 2, 2012 1:22 PM Subject: Re: [TMIC] Blown Away it is definitely something to hold onto when in the spirit of our mind,the things we suffer become like the poor countryside that is up to us to embrace the beauty that surrounds us to keep us sane in an insane situation. I watch way to much news on TV,that doesn't help a thing. Thank God i am surrounded with grandchildren!!! (and you folks!) it is the attitude and not so much the aptitude that will definitely determine our altitude. From: a...@artfarm.com a...@artfarm.com To: Dalton Garis malugss...@gmail.com; tmic-list@eskimo.com Sent: Sunday, April 1, 2012 11:03 PM Subject: Re: [TMIC] Blown Away This reads like a poem, Dalton!!! You give the picture images that encapsulate the facts. Throughout my many discussions and meetings on the transportation issue here, I like to pull out as to how the suicide rate here is higher than in New York City… No one has to think about the disabled because they don't see the disabled and they like it like that. I've already lived through various folks' awakenings as their aged parents or mentally challenged kids need to get around somewhere or do something and they can't. And the person can't always be the chauffeur… then i get the note or the call…. Or as the annoyingly chipper woman did, failing to find a solution, just quit her job as the mobility manager. She had been, as some here have, insulting about my perspective on the obstacles and barriers. (she'd been hired to get organizations to pool their resources and create a paratransit solution). I never knew teen suicide was an issue until i moved here, when one spring in the bucolic hills, 5 kids killed themselves…. and these were the middle class, the better off, the able bodied. It is that lack of empathy or understanding that kills. Thanks so much for the affirmation! Akua On Apr 1, 2012, at 6:44 AM, Dalton Garis wrote: There is a vast, vast difference living in the well-off countryside, the bucolic countryside, of beautiful sunsets and fond remembrances … and living in the poor countryside, stuck in a country where white bread wrappers blow in the wind and get snagged by low branches; And where used pampers litter the yards and old appliances are thrown down the hill behind the houses; And where no one has their own teeth after age 37; And where the only books for sale are Harlequin novels; And where women wear facial bruises on Monday's; And where you need three cars, so that one might start; And where seeing a doctor means bringing some trinket he might want in exchange for services rendered; And where the man of the house spends all his money on chroming his truck, while his wife and kids live in a trailer; And where the downtown has been gutted, borded-up and Wal-Marted. And where Monday mornings in March see the most suicides. That countryside is the daily reality of the country's poor. That countryside is rarely referenced or discussed. As a sawmill and woods worker in Maine, Vermont, Massachusetts, Montana, Colorado, New Mexico and Washington State, I knew that countryside well. Being a part of that countryside is disability enough. That countryside is a bad place to be if you are even more disabled. Dalton From: a...@artfarm.com Date: Sat, 31 Mar 2012 21:41:37 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Blown Away Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 31 Mar 2012 18:45:43 -0700 i'm dumbstruck at the question why do I stay coming from this group. I am paralyzed -- i would think folks here at least might understand what having a disability thrust on them late in life would mean. Or maybe i just didn't know that there were services that buy one's home, pack one up, and relocates them to more congenial and supportive communities. I never found such, but it could just be the limits of my imagination. Or maybe i'm the only person here without the money to just buy myself the solutions i need. I am obviously wrong on many counts.
Re: [TMIC] A Birthday wish [sort of ?]
pi good John like Pi Pi help John find way From: The Man goatdodd...@gmail.com To: tmic-list@eskimo.com Sent: Wednesday, March 14, 2012 6:26 AM Subject: [TMIC] A Birthday wish [sort of ?] Hey everybody..Happy-Pi-Day.. It's 3.14.2012 !!! Happy Birthday to You, Happy Birthday to You, Happy Birthday dear Pi Day, Happy BD2U. Pass it forward, ok!... I hope everyone is doing well [as could be expected]. Best wishes to you all from downunder! -- respectfully, Glendon - (a.k.a Goat Dodders) ...Living with Transverse-Myelitis since 2007, in Brisbane, Queensland, Australia... e. goatdodd...@gmail.com w. bloodywishfulthinking.blogspot.com t. @GoatDodders
Re: [TMIC] Re: tmic-digest Digest V2012 #91
my Dr had me on steroids for about a week to slow my auto immune system way down because that was what was attacking my spine.i havent had them since. From: Dalton Garis malugss...@gmail.com To: James Berg molokai...@gmail.com; a...@artfarm.com Cc: tmic-list@eskimo.com Sent: Saturday, February 18, 2012 5:39 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 Yes; I had four days of steroid drip in the beginning to reduce the spinal inflammation and hopefully prevent any new lesions. But that was during the initial stage when my spine seemed to be on fire. But after that I only received a steroid drip during a flair-up about six month's later, but no more often. Pleas Please try to see someone else if you can. You can go to Webmd to search for a doctor who knows about TM/MS. Best, Dalton From: James Berg molokai...@gmail.com Date: Sat, 18 Feb 2012 09:54:21 -1000 To: a...@artfarm.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Feb 2012 11:58:02 -0800 That is very accurate information Akua has provided not only to you,but to the whole community. I too have never heard of steroids being continuously prescribed. My doctors weened me off them after a few weeks. They didn't help anyway. Jim On Fri, Feb 17, 2012 at 6:37 PM, a...@artfarm.com wrote: On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: what do i do Wishing you the best, Candy. ™ does not turn into anything… there is no prescribed route for it. I am alarmed that you are prescribed steroids continuously --- the jury is out as to its efficacy as an intervention and I hadn't heard of it prescribed continuously. Sounds like you need may need some second and third opinions. When I was first in the hospital I made a list of the recommended drugs, looked each up got print outs and did a spread sheet of effect and side effects. My recent tests included a CT scan, lung capacity and bone density. My bone density has diminished from my paralysis and (perhaps) steroid use. My vitamin regimen includes calcium, D, Folic acid, iron to remediate the losses due to ™. Hopefully you've had a blood screen -- became anemic as a result of this condition. Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an 8 is now about a 3 and i only take one drug for ™ -- low dose naltrexone. That all be well, Akua
Re: [TMIC] Fwd: Fw: Motion induced blindness
sort of like the one i seen the other day when you looked at a man sitting a certain way it looked as if his head disappeared. blind spots are just that. From: Janice Nichols jan...@centurytel.net To: pjv1...@chartermi.net; James Berg molokai...@gmail.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Tuesday, February 7, 2012 8:04 PM Subject: Re: [TMIC] Fwd: Fw: Motion induced blindness Really interesting. I we think we know everything about ourselves! Janice From: pjv1...@chartermi.net Sent: Tuesday, February 07, 2012 6:52 PM To: James Berg Cc: transverse myelitis Subject: RE: [TMIC] Fwd: Fw: Motion induced blindness Jim I tried it. It is amazing and enlightening. I'll be sending this to a few people including my nephew who is in in school to earn his commercial pilot license. Thanks for sharing. Patti - Michigan On Tue, Feb 7, 2012 at 3:57 PM, James Berg wrote: I usually don't forward things but since I have eye problems I thought I'd share Jim -- Forwarded message -- From: James Berg jamesrb...@yahoo.com Date: Tue, Feb 7, 2012 at 10:53 AM Subject: Fw: Motion induced blindness To: molokai...@gmail.com molokai...@gmail.com - Forwarded Message - From: Larry Shawhan larryshaw...@yahoo.com To: Sent: Tuesday, February 7, 2012 10:28 AM Subject: Fw: Motion induced blindness This is frightening! It works exactly like it says, and is one major reason people in cars can ‘look right at you’ (when you're on a motorcycle or bicycle)---AND NOT SEE YOU. From a former Naval Aviator. This is a great illustration of what we were taught about scanning outside the cockpit when I went through training back in the '50s. We were told to scan the horizon for a short distance, stop momentarily, and repeat the process. I can remember being told why this was the most effective technique to locate other aircraft. It was emphasized (repeatedly) to NOT fix your gaze for more than a couple of seconds on any single object. The instructors, some of whom were WWII veterans with years of experience, instructed us to continually keep our eyes moving and our head on a swivel because this was the best way to survive, not only in combat, but from peacetime hazards (like a midair collision) as well. We basically had to take the advice on faith (until we could experience for ourselves) because the technology to demonstrate it didn't exist at that time. Click on the link below for a demonstration ... http://www.msf-usa.org/motion.html [ Target fixation is also a phenomena that plays into this.]
[TMIC] February Birthday(and a little extra)
Happy Birthday! February was named after the Latin term februum, which means purification, via the purification ritual Februa held on February 15 (full moon) in the old lunar Roman calendar. January and February were the last two months to be added to the Roman calendar, since the Romans originally considered winter a monthless period. They were added by Numa Pompilius about 713 BC. February remained the last month of the calendar year until the time of the decemvirs (c. 450 BC), when it became the second month. At certain intervals February was truncated to 23 or 24 days; and a 27-day intercalary month, Intercalaris, was inserted immediately after February to realign the year with the seasons. Under the reforms that instituted the Julian calendar, Intercalaris was abolished, leap years occurred regularly every fourth year, and in leap years February gained a 29th day. Thereafter, it remained the second month of the calendar year, meaning the order that months are displayed (January, February, March, ..., December) within a year-at-a-glance calendar. Even during the Middle Ages, when the numbered Anno Domini year began on March 25 or December 25, the second month was February whenever all twelve months were displayed in order. The Gregorian calendar reforms made slight changes to the system for determining which years were leap years and thus contained a 29-day February. Historical names for February include the Old English terms Solmonath (mud month) and Kale-monath (named for cabbage) as well as Charlemagne's designation Hornung. In Finnish, the month is called helmikuu, meaning month of the pearl; when snow melts on tree branches, it forms droplets, and as these freeze again, they are like pearls of ice. In Polish and Ukrainian, respectively, the month is called luty or лютий, meaning the month of ice or hard frost.
Re: [TMIC] February Birthday(and a little extra)
lol google it(or just do a search) Elizabeth and you will find it in Wikipedia From: Elizabeth Clark xbeecla...@gmail.com To: 'john snodgrass' jcs...@yahoo.com; 'transverse myelitis' tmic-list@eskimo.com Sent: Wednesday, February 1, 2012 4:31 PM Subject: RE: [TMIC] February Birthday(and a little extra) We learn something new every day! Very interesting to someone like me who loves history and genealogy. Thanks John! p.s. – what do you know about March (my birth month)? From:john snodgrass [mailto:jcs...@yahoo.com] Sent: Wednesday, February 01, 2012 10:15 AM To: transverse myelitis Subject: [TMIC] February Birthday(and a little extra) Happy Birthday! February was named after the Latin term februum, which means purification, via the purification ritual Februa held on February 15 (full moon) in the old lunar Roman calendar. January and February were the last two months to be added to the Roman calendar, since the Romans originally considered winter a monthless period. They were added by Numa Pompilius about 713 BC. February remained the last month of the calendar year until the time of the decemvirs (c. 450 BC), when it became the second month. At certain intervals February was truncated to 23 or 24 days; and a 27-day intercalary month, Intercalaris, was inserted immediately after February to realign the year with the seasons. Under the reforms that instituted the Julian calendar, Intercalaris was abolished, leap years occurred regularly every fourth year, and in leap years February gained a 29th day. Thereafter, it remained the second month of the calendar year, meaning the order that months are displayed (January, February, March, ..., December) within a year-at-a-glance calendar. Even during the Middle Ages, when the numbered Anno Domini year began on March 25 or December 25, the second month was February whenever all twelve months were displayed in order. The Gregorian calendar reforms made slight changes to the system for determining which years were leap years and thus contained a 29-day February. Historical names for February include the Old English terms Solmonath (mud month) and Kale-monath (named for cabbage) as well as Charlemagne's designation Hornung. In Finnish, the month is called helmikuu, meaning month of the pearl; when snow melts on tree branches, it forms droplets, and as these freeze again, they are like pearls of ice. In Polish and Ukrainian, respectively, the month is called luty or лютий, meaning the month of ice or hard frost.
Re: [TMIC] Squeezes
thats a new one on me! in other words,,,never heard of it. being different sounds strange,sure hope it is nothing additional other than different From: James Berg molokai...@gmail.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, January 25, 2012 3:55 PM Subject: [TMIC] Squeezes Recently I have been experiencing full body squeezes when I am stretched out in bed. Has anyone else had such a thing happen? Pretty scary!
Re: [TMIC] 35 Things you probably don't know about TM
made me dizzy just reading! lol From: Lezli a...@artfarm.com To: tmic-list@eskimo.com Sent: Wednesday, January 25, 2012 4:53 PM Subject: [TMIC] 35 Things you probably don't know about TM Thank you ver much , John! While far from a newbie, sadly, there are things I forgot and forget about ™. It was comforting to be reminded that my lack of energy may be part of it. I used to live 20 action packed hours a day and I was berating myself for not getting enough done of late. On reflection, both the desire to create and the overextension ( living a 20 hour day one day on fire and then sleeping for 12 hours for the next two) are good signs.
Re: [TMIC] Squeezes
actually Emily the banding is not a full body deal but localized. mine is at my waistline . a squeezing of the whole body is not common at all. buzzing,thrumming,pins and needles i could understand but not a full body squeeze. From: Emily em...@telephonelady.com To: 'john snodgrass' jcs...@yahoo.com; 'James Berg' molokai...@gmail.com; 'transverse myelitis' tmic-list@eskimo.com Sent: Wednesday, January 25, 2012 9:41 PM Subject: RE: [TMIC] Squeezes I believe it is called banding….talk to your neuro about it….it is quite common with TM. From:john snodgrass [mailto:jcs...@yahoo.com] Sent: Wednesday, January 25, 2012 7:09 PM To: James Berg; transverse myelitis Subject: Re: [TMIC] Squeezes thats a new one on me! in other words,,,never heard of it. being different sounds strange,sure hope it is nothing additional other than different From:James Berg molokai...@gmail.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, January 25, 2012 3:55 PM Subject: [TMIC] Squeezes Recently I have been experiencing full body squeezes when I am stretched out in bed. Has anyone else had such a thing happen? Pretty scary!
Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM)
I JUST FOUND OUT TODAY THAT THIS IS OLD NEWS AND SHE IS TAKEN CARE OF. From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; kimharrison...@comcast.net kimharrison...@comcast.net; TMIC tmic-list@eskimo.com Sent: Monday, January 23, 2012 11:06 PM Subject: Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) I am so sorry for all this for that girl; I am comforted somewhat by the promise from God that He looks out for all of us in turn. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Mon, 23 Jan 2012 18:38:20 -0800 (PST) To: kimharrison...@comcast.net kimharrison...@comcast.net, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 23 Jan 2012 18:41:46 -0800 My prayers to that girl and her situation!! I am s fortunate that i was attacked in my lower back! God help us all From: kimharrison...@comcast.net kimharrison...@comcast.net To: TMIC tmic-list@eskimo.com Sent: Monday, January 23, 2012 3:34 PM Subject: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) Girl Unable to Move Makes an Unforgettable Video From Her Hospital Bed http://www.godvine.com/Girl-Unable-to-Move-Makes-an-Unforgettable-Video-From-Her-Hospital-Bed-1061.html
Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM)
i suppose her message of keep smiling is timeless though From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; kimharrison...@comcast.net kimharrison...@comcast.net; TMIC tmic-list@eskimo.com Sent: Monday, January 23, 2012 11:06 PM Subject: Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) I am so sorry for all this for that girl; I am comforted somewhat by the promise from God that He looks out for all of us in turn. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Mon, 23 Jan 2012 18:38:20 -0800 (PST) To: kimharrison...@comcast.net kimharrison...@comcast.net, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 23 Jan 2012 18:41:46 -0800 My prayers to that girl and her situation!! I am s fortunate that i was attacked in my lower back! God help us all From: kimharrison...@comcast.net kimharrison...@comcast.net To: TMIC tmic-list@eskimo.com Sent: Monday, January 23, 2012 3:34 PM Subject: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) Girl Unable to Move Makes an Unforgettable Video From Her Hospital Bed http://www.godvine.com/Girl-Unable-to-Move-Makes-an-Unforgettable-Video-From-Her-Hospital-Bed-1061.html
Re: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM)
My prayers to that girl and her situation!! I am s fortunate that i was attacked in my lower back! God help us all From: kimharrison...@comcast.net kimharrison...@comcast.net To: TMIC tmic-list@eskimo.com Sent: Monday, January 23, 2012 3:34 PM Subject: [TMIC] Girl with TM Unable to Move Makes an Unforgettable Video From Her Hospital Bed (TM) Girl Unable to Move Makes an Unforgettable Video From Her Hospital Bed http://www.godvine.com/Girl-Unable-to-Move-Makes-an-Unforgettable-Video-From-Her-Hospital-Bed-1061.html
Re: [TMIC] (no subject)
I KNEW THEY WERE ALIENS! From: bgunny7...@aol.com bgunny7...@aol.com To: jkavanag...@msn.com; hwyfli...@yahoo.com; Tmic-list@eskimo.com Sent: Monday, January 23, 2012 9:58 AM Subject: [TMIC] (no subject)
Re: [TMIC] HAPPY NEW YEAR!
my wife is a 49'er die hard fan,,,it is a death match,,,if i vote for the opposing teamI die! I love my Wife I love my Wife I love my Wife I love my Wife GOOO 9'ERS we'll just keep this our little secret))) From: Barbara Alma balmat...@aol.com To: elbobber...@earthlink.net; pjv1...@chartermi.net; jcs...@yahoo.com Cc: tmic-list@eskimo.com Sent: Saturday, January 21, 2012 11:02 PM Subject: Re: [TMIC] HAPPY NEW YEAR! Also wishing really hard for the 49'ers this year. Tomorrow we'll know if they are going or not! Go 9ers!!! Hugs, Barbara A in Auburn CA -Original Message- From: bobberino elbobber...@earthlink.net To: pjv1234 pjv1...@chartermi.net; john snodgrass jcs...@yahoo.com Cc: tmic tmic-list@eskimo.com Sent: Sat, Jan 21, 2012 2:26 pm Subject: Re: [TMIC] HAPPY NEW YEAR! Sorry y'all, but this year it'll be the 49rs. BobbyJim - Original Message - From: pjv1...@chartermi.net To: john snodgrass Cc: tmic Sent: Sunday, January 01, 2012 7:40 PM Subject: Re: [TMIC] HAPPY NEW YEAR! John Whether it was a typo or on purpose the mental picture of a super bowel made me smile before I even read your punch line. Then I wondered why you picked Michigan's Detroit Lions team who struggled for many years and could see them running for a touch down in their blue and white uniforms ... ...so I did laugh out loud when I finally got to the end. (The Detroit Lions vs. the Christians?) I know who won that one! Patti - Michigan On Sun, Jan 1, 2012 at 12:16 AM, john snodgrass wrote: I HEARD THAT SOME OF YOU ALL WERE SO OLD THAT YOU CAN REMEMBER THE FIRST SUPER BOWEL WHO PLAYED IN THAT ONE? THE LIONS AND THE CHRISTIANS? HA! HAPPY NEW YEAR EVERYONE TRY AND SMILE MORE THIS YEAR LAUGH OUT LOUD WHEN YA CAN ___ From: Kevin Wolfthal wolft...@optonline.net To: Akua a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Sunday, January 1, 2012 12:09 AM Subject: Re: [TMIC] HAPPY NEW YEAR! Wishing you and everyone on the TMIC a Happy and Heathier New Year! Kevin Akua wrote: Wishing Everyone HEALING, HEALTH, PEACE and PROSPERITY! AKUA
Re: [TMIC] HAPPY NEW YEAR!
ya think. DiNozzo? From: bobberino elbobber...@earthlink.net To: pjv1...@chartermi.net; john snodgrass jcs...@yahoo.com Cc: tmic tmic-list@eskimo.com Sent: Saturday, January 21, 2012 5:26 PM Subject: Re: [TMIC] HAPPY NEW YEAR! Sorry y'all, but this year it'll be the 49rs. BobbyJim - Original Message - From: pjv1...@chartermi.net To: john snodgrass Cc: tmic Sent: Sunday, January 01, 2012 7:40 PM Subject: Re: [TMIC] HAPPY NEW YEAR! John Whether it was a typo or on purpose the mental picture of a super bowel made me smile before I even read your punch line. Then I wondered why you picked Michigan's Detroit Lions team who struggled for many years and could see them running for a touch down in their blue and white uniforms ... ...so I did laugh out loud when I finally got to the end. (The Detroit Lions vs. the Christians?) I know who won that one! Patti - Michigan On Sun, Jan 1, 2012 at 12:16 AM, john snodgrass wrote: I HEARD THAT SOME OF YOU ALL WERE SO OLD THAT YOU CAN REMEMBER THE FIRST SUPER BOWEL WHO PLAYED IN THAT ONE? THE LIONS AND THE CHRISTIANS? HA! HAPPY NEW YEAR EVERYONE TRY AND SMILE MORE THIS YEAR LAUGH OUT LOUD WHEN YA CAN ___ From: Kevin Wolfthal wolft...@optonline.net To: Akua a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Sunday, January 1, 2012 12:09 AM Subject: Re: [TMIC] HAPPY NEW YEAR! Wishing you and everyone on the TMIC a Happy and Heathier New Year! Kevin Akua wrote: Wishing Everyone HEALING, HEALTH, PEACE and PROSPERITY! AKUA
Re: [TMIC] OT Fwd: One Pissed off Canadian Housewife
those at the top of the food chain could care less what we care or dont care about. common sense is not so common with them. and with good ole Uncle Sam,,the buck stops here? seen a sticker one time that read remember,,I am your Uncle not your Daddy! lol From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Friday, January 20, 2012 1:08 PM Subject: [TMIC] Fwd: One Pissed off Canadian Housewife From: gra...@aol.com To: jcd...@aol.com, bgunny7...@aol.com, holly...@gmail.com, jamieless...@rocketmail.com, flym...@aim.com, melh...@aol.com, sarabeck1...@aol.com, r.whit...@cityofwestfield.org Sent: 1/20/2012 9:59:06 A.M. Pacific Standard Time Subj: Fwd: One Pissed off Canadian Housewife Please read this. It's so well written. From: murp...@aim.com To: brinin...@aol.com, rkmsho...@yahoo.com, 42...@consolidated.net, vbdjjd...@aol.com, swampygirl1...@aim.com, sandraha...@msn.com, samwv1...@buffalo.com, pencho...@aol.com, jbbeje...@gmail.com, shumshe...@aol.com, hre2...@aol.com, keith62...@aol.com, motormouth917...@aol.com, isus...@aol.com, patisma...@aim.com, pl...@aol.com, gra...@aol.com Sent: 1/20/2012 12:41:06 P.M. Eastern Standard Time Subj: Fwd: One Pissed off Canadian Housewife Pam One Pissed off Canadian Housewife This is very good PLEASE read Thought you might like to read this letter to the editor. Ever notice how some people just seem to know how to write a letter? This one surely does! This was written by a Canadian woman, but oh how it also applies to the U.S.A., U.K. and Australia . THIS ONE PACKS A FIRM PUNCH Written by a housewife in New Brunswick , to her local newspaper. This is one ticked off lady... Are we fighting a war on terror or aren't we? Was it or was it not, started by Islamic people who brought it to our shores on September 11, 2001 and have continually threatened to do so since? Were people from all over the world, not brutally murdered that day, in downtown Manhattan , across the Potomac from the capitol of the USA and in a field in Pennsylvania ? Did nearly three thousand men, women and children die a horrible, burning or crushing death that day, or didn't they? Do you think I care about four U. S. Marines urinating on some dead Taliban insurgents? And I'm supposed to care that a few Taliban were claiming to be tortured by a justice system of a nation they are fighting against in a brutal Insurgency. I'll care about the Koran when the fanatics in the Middle East, start caring about the Holy Bible, the mere belief of which, is a crime punishable by beheading in Afghanistan . I'll care when these thugs tell the world they are sorry for hacking off Nick Berg's head, while Berg screamed through his gurgling slashed throat. I'll care when the cowardly so-called insurgents in Afghanistan , come out and fight like men, instead of disrespecting their own religion by hiding in Mosques and behind women and children. I'll care when the mindless zealots who blow themselves up in search of Nirvana, care about the innocent children within range of their suicide Bombs. I'll care when the Canadian media stops pretending that their freedom of Speech on stories, is more important than the lives of the soldiers on the ground or their families waiting at home, to hear about them when something happens. In the meantime, when I hear a story about a CANADIAN soldier roughing up an Insurgent terrorist to obtain information, know this: I don't care. When I see a wounded terrorist get shot in the head when he is told not to move because he might be booby-trapped, you can take it to the bank: I don't care. Shoot him again. When I hear that a prisoner, who was issued a Koran and a prayer mat, and fed 'special' food, that is paid for by my tax dollars, is complaining that his holy book is being 'mishandled,' you can absolutely believe, in your heart of hearts: I
Re: [TMIC] Is it really so important to know?
reoccurance of symptoms my Dr told me was that the nerves that were damaged with the TM are still damages so we get the problems we get because of that.damaged nerves. some nerves heal a little after we are attacked and we get different symptoms when that happens and it is the nerve sending signals and sometimes those signals are the sort you would get when other problems occur but are not actually there,therefor we treat symptoms and cannot fix anything. if anything gets fixed it would be a spontaneous healing of the nerves. thats what I have read and thats what i was told other than that I have no clue From: PAMELA S subers...@msn.com To: jan...@centurytel.net; celr...@aol.com; robthe...@aol.com; TMC Group tmic-list@eskimo.com Sent: Tuesday, January 17, 2012 1:52 PM Subject: RE: [TMIC] Is it really so important to know? Hello all; I agree with Celrod on this. I would like to know what causes things because of the reoccurance of symptoms after recovery for a while. I would like to prevent them. I also notice a tendancy to autoimmune type problems in the family tree. But, my only concern with cause is prevention of further problems because I do like what I do. Celrod, I've had the same problem with word finding and written communication during acute episodes. Neurologists will claim I'm depressed. But, the only time I feel depressed is when I can't work due to this stuff. When I'm working I feel great. And, it usually takes quite a bit of pain and prolonged periods of inactivity to get me down. So, I really do believe this is the cause of the depression, not the other way around. I am beginning that greens or hunter gatherer diet. It's not what I used to call hunter gatherer diet when we talked about diabetes prevention in native americans, but that was a long time ago, and it'll do. Pam From: jan...@centurytel.net To: celr...@aol.com; robthe...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? Date: Sun, 15 Jan 2012 22:56:07 -0600 Jane, This is really new to me - the fact that you have had so many episodes/attacks of TM, and then you are back to normal. I don’t know anything about your other disease, but I am sure you have checked it out. Hope someone will pop up here to talk to you about it and can empathize. Janice From: celr...@aol.com Sent: Sunday, January 15, 2012 3:19 PM To: robthe...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I was told I had TM on April 26, 1998 although I had been feeling numb and tingly in my leg and trunk since October. It was a slow onset. It is almost 14 years! Don't know why my immune system attacked me, but it did. I have had 6 episodes where I felt numb and tingly and the doctor put me back on steroids and it went away. Personally I think stress was a big factor in my attacks. I also have another immune disease-bulbous pempgoid. Now I am starting to ramble. It helps to talk to someone who knows what I am talking about and it did initially involve my brain because I could not think of the right words or write them. That has returned slowly. Jane/Splendora Tx In a message dated 1/15/2012 11:12:28 A.M. Central Standard Time, robthe...@aol.com writes: I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a curebut at my age (64) I pray it does not get worse and that new medications might make me feel better. Ok I am starting to ramble All the best to all! Rob in New Jersey
Re: [TMIC] Is it really so important to know?
I thought i found something today. I done a random search on the buzzing in my body and legs alone(even though the buzzing goes from the top of my head to the bottom of my feet) all i found were a multitude of people with the same problem. shoulda figured. From: Robert Pall robthe...@aol.com To: subers...@msn.com; tmic-list@eskimo.com Sent: Tuesday, January 17, 2012 2:05 PM Subject: Re: [TMIC] Is it really so important to know? I understand the desire to know and understand what caused us to get TM. However the fact is that no matter how much research one does they will not find an answer because one does not exist at this time. I believe we were just unlucky and therefore I will not waste my time looking into the cause.but I will spend much time looking for the right medications that can relieve my suffering. Perhaps someday the medical community will provide us with the answeruntil then I will do the best I can to fight this condition and pray for a cure (especially for the younger people). All the best! Rob in New Jersey -Original Message- From: PAMELA S subers...@msn.com To: jannic jan...@centurytel.net; celrods celr...@aol.com; robthecfo robthe...@aol.com; TMC Group tmic-list@eskimo.com Sent: Tue, Jan 17, 2012 1:52 pm Subject: RE: [TMIC] Is it really so important to know? Hello all; I agree with Celrod on this. I would like to know what causes things because of the reoccurance of symptoms after recovery for a while. I would like to prevent them. I also notice a tendancy to autoimmune type problems in the family tree. But, my only concern with cause is prevention of further problems because I do like what I do. Celrod, I've had the same problem with word finding and written communication during acute episodes. Neurologists will claim I'm depressed. But, the only time I feel depressed is when I can't work due to this stuff. When I'm working I feel great. And, it usually takes quite a bit of pain and prolonged periods of inactivity to get me down. So, I really do believe this is the cause of the depression, not the other way around. I am beginning that greens or hunter gatherer diet. It's not what I used to call hunter gatherer diet when we talked about diabetes prevention in native americans, but that was a long time ago, and it'll do. Pam From: jan...@centurytel.net To: celr...@aol.com; robthe...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? Date: Sun, 15 Jan 2012 22:56:07 -0600 Jane, This is really new to me - the fact that you have had so many episodes/attacks of TM, and then you are back to normal. I don’t know anything about your other disease, but I am sure you have checked it out. Hope someone will pop up here to talk to you about it and can empathize. Janice From: celr...@aol.com Sent: Sunday, January 15, 2012 3:19 PM To: robthe...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I was told I had TM on April 26, 1998 although I had been feeling numb and tingly in my leg and trunk since October. It was a slow onset. It is almost 14 years! Don't know why my immune system attacked me, but it did. I have had 6 episodes where I felt numb and tingly and the doctor put me back on steroids and it went away. Personally I think stress was a big factor in my attacks. I also have another immune disease-bulbous pempgoid. Now I am starting to ramble. It helps to talk to someone who knows what I am talking about and it did initially involve my brain because I could not think of the right words or write them. That has returned slowly. Jane/Splendora Tx In a message dated 1/15/2012 11:12:28 A.M. Central Standard Time, robthe...@aol.com writes: I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors
Re: [TMIC] Is it really so important to know?
all I can or would answer to that is AMAN! but for a remark it is this; I hate to see the children suffer these things. breaks my heart above all things! you are blessed with her,we are blessed with you both! thanks for sharing!!! From: Mary Anne Egan mae...@thestettlergroup.com To: Robert Pall robthe...@aol.com Cc: subers...@msn.com; tmic-list@eskimo.com Sent: Tuesday, January 17, 2012 2:22 PM Subject: Re: [TMIC] Is it really so important to know? I don't normally chime in...I am not an adult living with TM or the residual affects...I am the parent of a child who contracted TM at seven months...as such I too would love to know what caused it. Mostly because if there is a genetic component or condition which attributed to this outcomeit would be in the hopes of preventing it from happening to any of my other children or anyone's children for that matter (adults as well). Ideally for me finding why this happened to her is a separate and less concerning pointI could easily say this is a case of bad luck...but then I would also have to say that bad luck is all around me...my father died three months before my daughter was paralyzed. my daughter proceeded to be in and out of the hospital choking and unable to breathe, not once but twice after onset...as a young child she could not tell us anything...we proceeded to go in and out all of the next couple of years with respirators and vents, etc...over the course of her life (now 9), she goes to a public school and has a normal lifeso for me it is ok...for her not so much...she is dynamic and determined but she is also sad and lonely...she does not have play dates, no one calls, she goes to parties as long as they are accessible (which is not always a consideration, understandably so)...she can not dress herself...she can ot get out of bed by herself...she can not dress the way she wants, she has a one to one aid, all day, no peer to peer privacy...she has to use a computer, go to the nurse to be cathed, can't really participate in gym or recess...she has to be pulled from class for PT and OT, she always needs modifications...she has the right to want to know why...but she never asksyou know whybecause I tell her...you are one of the lucky ones. There are people who have died from TM, people who cant talk, cant feed themselves, cant breathe on their ownyes it easy for me to say but it is true...she is one of the lucky ones and quite frankly so am I...in all that TM brings it is essential to remember what it did not take away...finding out why or how is not the information my child needs. On her worst day she knows it is still here with me and I am grateful. On Tue, Jan 17, 2012 at 2:05 PM, Robert Pall robthe...@aol.com wrote: I understand the desire to know and understand what caused us to get TM. However the fact is that no matter how much research one does they will not find an answer because one does not exist at this time. I believe we were just unlucky and therefore I will not waste my time looking into the cause.but I will spend much time looking for the right medications that can relieve my suffering. Perhaps someday the medical community will provide us with the answeruntil then I will do the best I can to fight this condition and pray for a cure (especially for the younger people). All the best! Rob in New Jersey -Original Message- From: PAMELA S subers...@msn.com To: jannic jan...@centurytel.net; celrods celr...@aol.com; robthecfo robthe...@aol.com; TMC Group tmic-list@eskimo.com Sent: Tue, Jan 17, 2012 1:52 pm Subject: RE: [TMIC] Is it really so important to know? Hello all; I agree with Celrod on this. I would like to know what causes things because of the reoccurance of symptoms after recovery for a while. I would like to prevent them. I also notice a tendancy to autoimmune type problems in the family tree. But, my only concern with cause is prevention of further problems because I do like what I do. Celrod, I've had the same problem with word finding and written communication during acute episodes. Neurologists will claim I'm depressed. But, the only time I feel depressed is when I can't work due to this stuff. When I'm working I feel great. And, it usually takes quite a bit of pain and prolonged periods of inactivity to get me down. So, I really do believe this is the cause of the depression, not the other way around. I am beginning that greens or hunter gatherer diet. It's not what I used to call hunter gatherer diet when we talked about diabetes prevention in native americans, but that was a long time ago, and it'll do. Pam From: jan...@centurytel.net To: celr...@aol.com; robthe...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? Date: Sun, 15 Jan 2012 22:56:07 -0600 Jane, This is really new to me
Re: [TMIC] is there a connection between low potassium and TM?
I reckon thats why the neuro has us fill out the medicle history of sorts each time we visit,,to see what if anything that they may do that would give us some relief. From: Janice Nichols jan...@centurytel.net To: Dalton Garis malugss...@gmail.com; john snodgrass jcs...@yahoo.com; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Sunday, January 15, 2012 1:13 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? Dalton, I hate that this is a part of your TM. It seems that most of us have a problem that seems separate from TM, but I wonder if it is really. Doctors will give you the symptoms of TM, then tell you what you can expect as time passes. You can feel you are making progress, then another “thing” happens to you to complicate life. Maybe that is just what TM does. When I was in the hospital with TM, doctors always gave me the “normal” scenario. They never talked about the continued or new problems that crop up that I have experienced and heard about from you all. Actually, I don’t think they know from one person to another what to expect. Anyway, that is my take on TM. On a good note, I have improved much more than the medical field said I would after the first 2 years. I bet many of you have too. Janice From: Dalton Garis Sent: Sunday, January 15, 2012 1:28 AM To: Janice Nichols ; john snodgrass ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? True enough; But it seems to have opened some kind of route to partial epileptic seizures, because I just stare out an can't do much sometimes for hours. When they first started they were almost exclusively physical, just bodily stiffness and wave after wave of contraptions, first in the back, then in the front. But after a while they began to affect me mentally as well, until the mental situation became uppermost as now. When the attack starts, then my brain seizes up. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 14 Jan 2012 22:29:37 -0600 To: john snodgrass jcs...@yahoo.com, Dalton Garis malugss...@gmail.com, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? I was always told that scars left on the spine meant TM, and scars left on the brain meant MS. I was wondering if there was another problem going on if speech was affected. Dalton has problems trying to speak during seizures, which I would expect, but on a regular basis in talking to TM’ers, I have not noticed anyone saying they had a problem with speech. Janice From: john snodgrass Sent: Saturday, January 14, 2012 8:39 PM To: Dalton Garis ; Janice Nichols ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? Janice why are you so concerned that TM has absolutely nothing to do with the brain. you have mentioned this several times. I am just curious,,i could honestly care less what it has to do with anything,,,just wondering. From: Dalton Garis malugss...@gmail.com To: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 8:39 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? Speech was affected! Couldn't talk during attacks, which come less now. I would try to speak and would lose control of arms and legs and would stiffen up like a tin solder. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 14 Jan 2012 18:59:25 -0600 To: Dalton Garis malugss...@gmail.com, john snodgrass jcs...@yahoo.com, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? And yet your speech was not affected. hm. Janice From: Dalton Garis Sent: Saturday, January 14, 2012 5:01 PM To: john snodgrass ; Janice Nichols ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? Brainstem, brainstem; Mine was in the upper brainstem, but not the brain itself, something called the Pons, which is some kind of switching station between brain-will and body-can. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Sat, 14 Jan 2012 13:28:07 -0800 (PST) To: Janice Nichols jan...@centurytel.net, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 14 Jan 2012 13:31:29 -0800 reminds me of something Dalton said before concerning speech,and when I think about it,, speech is a brain thing,,,so them either there's more
Re: [TMIC] Is it really so important to know?
thats is a good case to wonder. in a way I wonder if we minded our mitochondria like the Dr lady done in the video with MS, would it make any difference at all because it seams as if our immune system was more of a bandit,,,not having good instructions,when we were attacked. then again it may just beone of those things From: Elizabeth Clark xbeecla...@gmail.com To: 'Janice Nichols' jan...@centurytel.net; tmic-list@eskimo.com; 'Robert Pall' robthe...@aol.com Sent: Sunday, January 15, 2012 2:30 PM Subject: RE: [TMIC] Is it really so important to know? While I agree, for the most part, about getting on with our lives with what we have, I also have a desire to know ‘the cause’ for the following reasons… Since contracting TM almost 6 years ago and discovering it is an auto-immune condition, my sister has been diagnosed with two different auto-immune conditions – Shingles (about 4 yrs. ago) and Celiac (gluten intolerance, just this last year). My mother has had three auto-immune conditions – Rheumatoid Arthritis, Temporal Arteritis (inflammation of blood vessels in arteries of the head, about 5 yrs. ago) and Alopecia (hair loss – two yrs. ago). In addition to TM, and though not considered an auto-immune condition, I also have Scoliosis – ‘idiopathic’ like my TM. Because of all of this, I worry about my two children developing any of the same – or other – auto-immune conditions at some point in their lives. I’d like to know there is some way in the near future to predict and/or prevent that happening. At 21 and 22, they’ve passed the ‘adolescent scoliosis’ age of 10-13 yrs, but my sister and I weren’t dx’d with the rest until our 50’s and my mother’s began in her 70’s. I’m sure this has occurred to other TM’ers who worry about having passed this or some other condition on to their children. Is it just genetics and was never realized years before, or is it environmental or related to all the processed food we eat that’s affected the depletion of vital vitamins and minerals our bodies need to be healthy? Whatever the cause, I want to know. In the meantime, I do what I can with what I have to lead the best life possible. Betty (in Northern California) From:Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, January 15, 2012 10:03 AM To: tmic-list@eskimo.com; Robert Pall Subject: Re: [TMIC] Is it really so important to know? Rob, I agree with you 100%. I admit I am really curious as to the “why” of it, but am getting used to my new life and am adjusting to most of it. All we can do, at this point, is treat the symptoms and share successes with the other TM’ers. Who knows, it just might help someone else - as I suspect has happened fairly often. Janice From:Robert Pall Sent:Sunday, January 15, 2012 11:12 AM To:tmic-list@eskimo.com Subject:[TMIC] Is it really so important to know? I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a curebut at my age (64) I pray it does not get worse and that new medications might make me feel better. Ok I am starting to ramble All the best to all! Rob in New Jersey
Re: [TMIC] Is it really so important to know?
if i were to advise i would say help when you can, be patient when you can't,,and be very prone to listen. love is the most important thing in this mess. From: Tracy Lea Bell tracyleab...@yahoo.com To: Elizabeth Clark xbeecla...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com tmic-list@eskimo.com; Robert Pall robthe...@aol.com Sent: Sunday, January 15, 2012 2:51 PM Subject: Re: [TMIC] Is it really so important to know? I realize that I am not the one that has TM but joined this support group because of my mom, you all have been amazing for me! Mom was just diagnosed with sleep apnea and myanethia gravis as well! These auto immune diseases are so devastating and very devastating to to me to watch my mom go through. Any advise!? Sent from my IPhone On Jan 15, 2012, at 1:30 PM, Elizabeth Clark xbeecla...@gmail.com wrote: While I agree, for the most part, about getting on with our lives with what we have, I also have a desire to know ‘the cause’ for the following reasons… Since contracting TM almost 6 years ago and discovering it is an auto-immune condition, my sister has been diagnosed with two different auto-immune conditions – Shingles (about 4 yrs. ago) and Celiac (gluten intolerance, just this last year). My mother has had three auto-immune conditions – Rheumatoid Arthritis, Temporal Arteritis (inflammation of blood vessels in arteries of the head, about 5 yrs. ago) and Alopecia (hair loss – two yrs. ago). In addition to TM, and though not considered an auto-immune condition, I also have Scoliosis – ‘idiopathic’ like my TM. Because of all of this, I worry about my two children developing any of the same – or other – auto-immune conditions at some point in their lives. I’d like to know there is some way in the near future to predict and/or prevent that happening. At 21 and 22, they’ve passed the ‘adolescent scoliosis’ age of 10-13 yrs, but my sister and I weren’t dx’d with the rest until our 50’s and my mother’s began in her 70’s. I’m sure this has occurred to other TM’ers who worry about having passed this or some other condition on to their children. Is it just genetics and was never realized years before, or is it environmental or related to all the processed food we eat that’s affected the depletion of vital vitamins and minerals our bodies need to be healthy? Whatever the cause, I want to know. In the meantime, I do what I can with what I have to lead the best life possible. Betty (in Northern California) From:Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, January 15, 2012 10:03 AM To: tmic-list@eskimo.com; Robert Pall Subject: Re: [TMIC] Is it really so important to know? Rob, I agree with you 100%. I admit I am really curious as to the “why” of it, but am getting used to my new life and am adjusting to most of it. All we can do, at this point, is treat the symptoms and share successes with the other TM’ers. Who knows, it just might help someone else - as I suspect has happened fairly often. Janice From:Robert Pall Sent:Sunday, January 15, 2012 11:12 AM To:tmic-list@eskimo.com Subject:[TMIC] Is it really so important to know? I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a curebut at my age (64) I pray it does not get worse and that new medications might make me feel better. Ok I am starting to ramble All the best to all! Rob in New Jersey
Re: [TMIC] is there a connection between low potassium and TM?
mine is fine yet I am a mess From: randy rankin rj_ran...@yahoo.com To: TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 12:02 PM Subject: [TMIC] is there a connection between low potassium and TM? Mary is not talking or communicating and is able to get to the bathroom with assistance but that side of the family is still clueless. I talked to them about TM, MS, and mylopothy and I might as well been talking about a new island off the coast of Java --- They are mentally fixed on the low potassium situation and not the fact she can't talk and she can't walk. But I did promise that I would ask the group to see if any of you were aware of any connections between low K and the neurological conditions that impacted you - experiencially or diagnostically
Re: [TMIC] is there a connection between low potassium and TM?
reminds me of something Dalton said before concerning speech,and when I think about it,, speech is a brain thing,,,so them either there's more to TM than what is actually discovered or there are other things going on with the brain that has an effect on speech because speech is a brain thingTM is a spine thing. if we only knew.. then again what would we do about it. perhaps it is a residual thing. body freaks out and brain has no way of realigning it so parts of it malfunctions as well. guessing,practicing medicine without a licenseyikes!!! From: Janice Nichols jan...@centurytel.net To: randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 1:10 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? One of the first things the hospital check when I got there was my Potassium level. Sadly, that was not the problem. “Celebrated” my 5th year of TM yesterday. I didn’t know that speech could be affected. Where did her “attack” occur? Janice From: randy rankin Sent: Saturday, January 14, 2012 11:02 AM To: TM Group Subject: [TMIC] is there a connection between low potassium and TM? Mary is not talking or communicating and is able to get to the bathroom with assistance but that side of the family is still clueless. I talked to them about TM, MS, and mylopothy and I might as well been talking about a new island off the coast of Java --- They are mentally fixed on the low potassium situation and not the fact she can't talk and she can't walk. But I did promise that I would ask the group to see if any of you were aware of any connections between low K and the neurological conditions that impacted you - experiencially or diagnostically
Re: [TMIC] is there a connection between low potassium and TM?
Dalton said before that his speech was effected From: Janice Nichols jan...@centurytel.net To: Dalton Garis malugss...@gmail.com; john snodgrass jcs...@yahoo.com; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 7:59 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? And yet your speech was not affected. hm. Janice From: Dalton Garis Sent: Saturday, January 14, 2012 5:01 PM To: john snodgrass ; Janice Nichols ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? Brainstem, brainstem; Mine was in the upper brainstem, but not the brain itself, something called the Pons, which is some kind of switching station between brain-will and body-can. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Sat, 14 Jan 2012 13:28:07 -0800 (PST) To: Janice Nichols jan...@centurytel.net, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 14 Jan 2012 13:31:29 -0800 reminds me of something Dalton said before concerning speech,and when I think about it,, speech is a brain thing,,,so them either there's more to TM than what is actually discovered or there are other things going on with the brain that has an effect on speech because speech is a brain thingTM is a spine thing. if we only knew.. then again what would we do about it. perhaps it is a residual thing. body freaks out and brain has no way of realigning it so parts of it malfunctions as well. guessing,practicing medicine without a licenseyikes!!! From: Janice Nichols jan...@centurytel.net To: randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 1:10 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? One of the first things the hospital check when I got there was my Potassium level. Sadly, that was not the problem. “Celebrated” my 5th year of TM yesterday. I didn’t know that speech could be affected. Where did her “attack” occur? Janice From: randy rankin Sent: Saturday, January 14, 2012 11:02 AM To: TM Group Subject: [TMIC] is there a connection between low potassium and TM? Mary is not talking or communicating and is able to get to the bathroom with assistance but that side of the family is still clueless. I talked to them about TM, MS, and mylopothy and I might as well been talking about a new island off the coast of Java --- They are mentally fixed on the low potassium situation and not the fact she can't talk and she can't walk. But I did promise that I would ask the group to see if any of you were aware of any connections between low K and the neurological conditions that impacted you - experiencially or diagnostically
Re: [TMIC] is there a connection between low potassium and TM?
Janice why are you so concerned that TM has absolutely nothing to do with the brain. you have mentioned this several times. I am just curious,,i could honestly care less what it has to do with anything,,,just wondering. From: Dalton Garis malugss...@gmail.com To: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 8:39 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? Speech was affected! Couldn't talk during attacks, which come less now. I would try to speak and would lose control of arms and legs and would stiffen up like a tin solder. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 14 Jan 2012 18:59:25 -0600 To: Dalton Garis malugss...@gmail.com, john snodgrass jcs...@yahoo.com, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? And yet your speech was not affected. hm. Janice From: Dalton Garis Sent: Saturday, January 14, 2012 5:01 PM To: john snodgrass ; Janice Nichols ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? Brainstem, brainstem; Mine was in the upper brainstem, but not the brain itself, something called the Pons, which is some kind of switching station between brain-will and body-can. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Sat, 14 Jan 2012 13:28:07 -0800 (PST) To: Janice Nichols jan...@centurytel.net, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 14 Jan 2012 13:31:29 -0800 reminds me of something Dalton said before concerning speech,and when I think about it,, speech is a brain thing,,,so them either there's more to TM than what is actually discovered or there are other things going on with the brain that has an effect on speech because speech is a brain thingTM is a spine thing. if we only knew.. then again what would we do about it. perhaps it is a residual thing. body freaks out and brain has no way of realigning it so parts of it malfunctions as well. guessing,practicing medicine without a licenseyikes!!! From: Janice Nichols jan...@centurytel.net To: randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 1:10 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? One of the first things the hospital check when I got there was my Potassium level. Sadly, that was not the problem. “Celebrated” my 5th year of TM yesterday. I didn’t know that speech could be affected. Where did her “attack” occur? Janice From: randy rankin Sent: Saturday, January 14, 2012 11:02 AM To: TM Group Subject: [TMIC] is there a connection between low potassium and TM? Mary is not talking or communicating and is able to get to the bathroom with assistance but that side of the family is still clueless. I talked to them about TM, MS, and mylopothy and I might as well been talking about a new island off the coast of Java --- They are mentally fixed on the low potassium situation and not the fact she can't talk and she can't walk. But I did promise that I would ask the group to see if any of you were aware of any connections between low K and the neurological conditions that impacted you - experiencially or diagnostically
Re: [TMIC] is there a connection between low potassium and TM?
i suppose it is again,,what ever neurologist you talk to. I would almost put money on it that if you talk to 3 you would get 3 different answers. you batting for Janice Laura ;) From: Laura Beaudin laura.beau...@gmail.com To: john snodgrass jcs...@yahoo.com Cc: Dalton Garis malugss...@gmail.com; Janice Nichols jan...@centurytel.net; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 9:43 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? Because if there is brain involvement, it's not TM. Laura The Home(School) Club On Sat, Jan 14, 2012 at 7:39 PM, john snodgrass jcs...@yahoo.com wrote: Janice why are you so concerned that TM has absolutely nothing to do with the brain. you have mentioned this several times. I am just curious,,i could honestly care less what it has to do with anything,,,just wondering. From: Dalton Garis malugss...@gmail.com To: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 8:39 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? Speech was affected! Couldn't talk during attacks, which come less now. I would try to speak and would lose control of arms and legs and would stiffen up like a tin solder. Dalton From: Janice Nichols jan...@centurytel.net Date: Sat, 14 Jan 2012 18:59:25 -0600 To: Dalton Garis malugss...@gmail.com, john snodgrass jcs...@yahoo.com, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? And yet your speech was not affected. hm. Janice From: Dalton Garis Sent: Saturday, January 14, 2012 5:01 PM To: john snodgrass ; Janice Nichols ; randy rankin ; TM Group Subject: Re: [TMIC] is there a connection between low potassium and TM? Brainstem, brainstem; Mine was in the upper brainstem, but not the brain itself, something called the Pons, which is some kind of switching station between brain-will and body-can. Dalton From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Sat, 14 Jan 2012 13:28:07 -0800 (PST) To: Janice Nichols jan...@centurytel.net, randy rankin rj_ran...@yahoo.com, TM Group tmic-list@eskimo.com Subject: Re: [TMIC] is there a connection between low potassium and TM? Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 14 Jan 2012 13:31:29 -0800 reminds me of something Dalton said before concerning speech,and when I think about it,, speech is a brain thing,,,so them either there's more to TM than what is actually discovered or there are other things going on with the brain that has an effect on speech because speech is a brain thingTM is a spine thing. if we only knew.. then again what would we do about it. perhaps it is a residual thing. body freaks out and brain has no way of realigning it so parts of it malfunctions as well. guessing,practicing medicine without a licenseyikes!!! From: Janice Nichols jan...@centurytel.net To: randy rankin rj_ran...@yahoo.com; TM Group tmic-list@eskimo.com Sent: Saturday, January 14, 2012 1:10 PM Subject: Re: [TMIC] is there a connection between low potassium and TM? One of the first things the hospital check when I got there was my Potassium level. Sadly, that was not the problem. “Celebrated” my 5th year of TM yesterday. I didn’t know that speech could be affected. Where did her “attack” occur? Janice From: randy rankin Sent: Saturday, January 14, 2012 11:02 AM To: TM Group Subject: [TMIC] is there a connection between low potassium and TM? Mary is not talking or communicating and is able to get to the bathroom with assistance but that side of the family is still clueless. I talked to them about TM, MS, and mylopothy and I might as well been talking about a new island off the coast of Java --- They are mentally fixed on the low potassium situation and not the fact she can't talk and she can't walk. But I did promise that I would ask the group to see if any of you were aware of any connections between low K and the neurological conditions that impacted you - experiencially or diagnostically
[TMIC] TM and the brain
I apologize for any inconvenience I have caused in the questioning of anything concerning TM and the brain. it really doesn't matter if I am right or wrong in these matters. it doesn't fix anything to be right and it doesn't break anything to be wrong. I would rather be wrong and quiet than right and argumentative. again,,,my apologies
Re: [TMIC] has anyone ever heard of Percutaneous Discectomy for a Herniated Disc?
I have been hurting bad for 4 years. im not trying anything. so if you are just looking for relief you may want to go to a pain clinic. that would be your best bet. even if you only had a ruptured disc. From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Monday, January 9, 2012 5:41 PM Subject: Re: [TMIC] has anyone ever heard of Percutaneous Discectomy for a Herniated Disc? Re: [TMIC] has anyone ever heard of Percutaneous Discectom Risks During a percutaneous discectomy, the surgeon has no way of seeing the herniated disc or the compressed nerve root. The surgery might not remove the herniated disc. So there is no guarantee that pressure on the nerve will improve. There are risks with anesthesia. What To Think About Many experts consider percutaneous discectomy to be a poor alternative to standard discectomy or microdiscectomy procedures. Why are you considering this? In terms of TM -- this would do nothing. An ex had multiple back surgeries including a discectomy -- I don't remember what kind... he went to an experimental place in the Bay area but his problems were markedly different from what I have with TM.my pain is not back pain except when i wrench my back or arm or shoulder lugging the unmoving half of my body.. Guys, I am actually at the point where I want to try anything. Please let me know if you ever heard of this and what you think. I found this link on the net after I saw an ad in my local paper today. Regards, Jeron http://www.webmd.com/back-pain/percutaneous-discectomy-for-a-herniated-disc --
Re: [TMIC] Extent of your TM? Pins and Needles
shameful truth Dalton From: Dalton Garis malugss...@gmail.com To: PAMELA S subers...@msn.com; molokai...@gmail.com; TMC Group tmic-list@eskimo.com Sent: Wednesday, January 4, 2012 7:41 AM Subject: Re: [TMIC] Extent of your TM? Pins and Needles Reminds me of my last semester at college; Since my arms were almost as weak as my legs and torso, I got the idea of using my office chair, which was on casters, to glide around the halls to and from classes and other appointments. But the Dean didn't like it. He was (and likely still is) an anglophile. That's someone who worships the old upper class British orthodoxy. I think he fancied himself some kind of colonial boss. Anyway, he saw me gliding on my office chair getting into the elevator and stopped me. Dalton, you can't go around like this. Why not? It works and allows me to attend to all my duties. It's not acceptable. Get a wheelchair, then. My arms are just as weak as my legs. I couldn't use a wheelchair. Then get one of those electric scooters. I teach on two campuses a half-mile apart. Who's going to load and unload the beast from my car? I don't care. I can't have one of my professors rolling around the halls in an office chair. It's just not acceptable. What would people think? Not proper, ay? What do they know? They should have some regard for the end that awaits all of us. I didn't last another semester. They got rid of me. But in truth, I could no longer do the work. That's when I understood the difference between a team and a family. A team eliminates weakened members while a family supports them, nurses them back, or takes care of them until they pass on. The workplace is like a team, I guess. But our country should be like a family toward its citizens. There I go again. Dalton From: PAMELA S subers...@msn.com Date: Tue, 3 Jan 2012 18:41:50 -0800 To: molokai...@gmail.com, TMC Group tmic-list@eskimo.com Subject: RE: [TMIC] Extent of your TM? Pins and Needles Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 3 Jan 2012 18:45:00 -0800 Jim, I could walk all along...but by holding my legs or joints stiff and swinging from the hip and I didn't get far. After steroids I was very weak, and couldn't tolerate any weight or get far for about 4 months. then I had a complete recovery over about a year except for occassional fatigue and spasming. In 2000, I lost it for 11 months and recovered over another year. I had progressive weakness starting about 2008 until August 2010 when I couldn't do anything let alone sit for more than an hour. I'm now getting around with orthotics and a brace for walking. But, I have a lot of muscle weakness and easily get pain aside from pins and needles, and burning with any exertion. Also, my hands and arms are now involved. But, I still get around pretty good if I can pace myself. Pam Date: Tue, 3 Jan 2012 11:55:22 -1000 From: molokai...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] Extent of your TM? Pins and Needles From the discussion of Pins and Needles it seems that most of you are able to get around and have some use of your legs. I have pins and needles from my feet to my belly and no use of my legs at all. And they weigh a ton. Been like this since day one. Did any of you lose the use of your legs and then get them back? If so, how long did it take and how did you do it? Jim
Re: [TMIC] RE Pins and Needles
most of the time i cant stand to have anything at all on my legs good to see that some get relief From: Dalton Garis malugss...@gmail.com To: pat cooley patticoole...@gmail.com; pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au; TM list tmic-list@eskimo.com Sent: Sunday, January 1, 2012 11:13 AM Subject: Re: [TMIC] RE Pins and Needles The best way to keep warm without getting that pins and needles feeling for me; Is to just wear my flannel pajamas under my pants. They are loose, soft and smooth, and don't trigger those fiery attacks that send me into seizures. Dalton From: pat cooley patticoole...@gmail.com Date: Sun, 1 Jan 2012 09:45:47 -0600 To: pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au, TM list tmic-list@eskimo.com Subject: Re: [TMIC] RE Pins and Needles Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 1 Jan 2012 07:49:01 -0800 Patti I have found that the cold is much worse for me. I have found that if I wear soft long underwear under my jeans it doesn't bother me and helps to keep me warmer. I too always have the pins needles plus the burning/freezing all the time, but it is so much worse in the evening.. I believe that I have learned to live with it since I am able to fall asleep and stay asleep all night except to go potty at least once maybe twice. I have also been told by doctors that the pins needles in the feet is called neuropathy, which is the same nerve pain that people with diabetes suffer from. I have a good friend with diabetes and has suffered with it for years. Patti in Wisconsin On Sat, Dec 31, 2011 at 9:22 PM, pjv1...@chartermi.net wrote: Gilly You are right to remide us about cothes, shoes and sock contributing to our TM pain. I think I've posted for eight straight winters that wearing blue jeans in cold weather puts me right to bed due the the intense pain the cold material causes. New TMers beware! It isn't just the heat that causes additional painful sensations. The cold weather causes its own set of problems. Patti - Michigan On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote: John, the sad fact is that nothing really takes it away, I have so far racked up a bit over 10 years of it. I must say though that I do believe it has decreased somewhat. Either that or I'm just used to it. I don't do meds as all they did was make me completely spaced out or zombie like and the pain was still there. Strangely enough, just the everyday little old aspro or Panadol help. Maybe because they concentrate on any other unrelated pain that then lessons the tm residuals. I have no idea why, I just know that's what happens for me. There are other external causes. The shoes you wear, your socks (always wear them inside out), the clothes you wear, particularly the type of material. I found that by paying attention to these things, I can lesson (not by a whole lot) these annoying freeze/burn feelings. Gilly - Original Message - From: john snodgrass To: James Berg; pjv1...@chartermi.net Cc: tmic Sent: Saturday, December 31, 2011 7:47 AM Subject: Re: [TMIC] RE Pins and Needles was talking with the neurologist yesterday about the buzzing,vibrating feeling that sometimes go all the way into my chest but stays mainly in my legs and feetwhen its not buzzing it is burning. he called it something but i failed to write it down. I tried MJ but for me,,,it made it intensify! nothing i have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax ,valium,Lyrica alcohol,MJ. scratch that off my to do list. ___ From: James Berg molokai...@gmail.com To: pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Friday, December 30, 2011 4:05 PM Subject: Re: [TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] New Year Prayer for all of us
thanks Dalton From: Dalton Garis malugss...@gmail.com To: TM list tmic-list@eskimo.com Sent: Sunday, January 1, 2012 11:10 AM Subject: Re: [TMIC] New Year Prayer for all of us Fellow sufferers; I offer this prayer, called the Remover of Difficulties prayer, which I have recited for decades, sometimes 400-500 times/day in times of great pain or stress, for inner calm and the expectation of better things to come from sources and directions I did not imagine. Is there any Remover of Difficulties save God? Say: Praised be God. He is God. All are His servants, and all abide by His bidding. Love, Dalton From: pat cooley patticoole...@gmail.com Date: Sun, 1 Jan 2012 09:45:47 -0600 To: pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au, TM list tmic-list@eskimo.com Subject: Re: [TMIC] RE Pins and Needles Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 1 Jan 2012 07:49:01 -0800 Patti I have found that the cold is much worse for me. I have found that if I wear soft long underwear under my jeans it doesn't bother me and helps to keep me warmer. I too always have the pins needles plus the burning/freezing all the time, but it is so much worse in the evening.. I believe that I have learned to live with it since I am able to fall asleep and stay asleep all night except to go potty at least once maybe twice. I have also been told by doctors that the pins needles in the feet is called neuropathy, which is the same nerve pain that people with diabetes suffer from. I have a good friend with diabetes and has suffered with it for years. Patti in Wisconsin On Sat, Dec 31, 2011 at 9:22 PM, pjv1...@chartermi.net wrote: Gilly You are right to remide us about cothes, shoes and sock contributing to our TM pain. I think I've posted for eight straight winters that wearing blue jeans in cold weather puts me right to bed due the the intense pain the cold material causes. New TMers beware! It isn't just the heat that causes additional painful sensations. The cold weather causes its own set of problems. Patti - Michigan On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote: John, the sad fact is that nothing really takes it away, I have so far racked up a bit over 10 years of it. I must say though that I do believe it has decreased somewhat. Either that or I'm just used to it. I don't do meds as all they did was make me completely spaced out or zombie like and the pain was still there. Strangely enough, just the everyday little old aspro or Panadol help. Maybe because they concentrate on any other unrelated pain that then lessons the tm residuals. I have no idea why, I just know that's what happens for me. There are other external causes. The shoes you wear, your socks (always wear them inside out), the clothes you wear, particularly the type of material. I found that by paying attention to these things, I can lesson (not by a whole lot) these annoying freeze/burn feelings. Gilly - Original Message - From: john snodgrass To: James Berg; pjv1...@chartermi.net Cc: tmic Sent: Saturday, December 31, 2011 7:47 AM Subject: Re: [TMIC] RE Pins and Needles was talking with the neurologist yesterday about the buzzing,vibrating feeling that sometimes go all the way into my chest but stays mainly in my legs and feetwhen its not buzzing it is burning. he called it something but i failed to write it down. I tried MJ but for me,,,it made it intensify! nothing i have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax ,valium,Lyrica alcohol,MJ. scratch that off my to do list. ___ From: James Berg molokai...@gmail.com To: pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Friday, December 30, 2011 4:05 PM Subject: Re: [TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] RE Pins and Needles
have not tried that. will consider. thanks From: bobberino elbobber...@earthlink.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Cc: Dalton Garis malugss...@gmail.com; Gillian Clark mingalett...@activ8.net.au Sent: Monday, January 2, 2012 4:58 PM Subject: Re: [TMIC] RE Pins and Needles Have y'all tried silk long johns...??? Very smooth to the skin. And they make great sleepware. BobbyJim in Elvisland - Original Message - From: john snodgrass To: transverse myelitis Sent: Monday, January 02, 2012 11:08 AM Subject: Re: [TMIC] RE Pins and Needles most of the time i cant stand to have anything at all on my legs good to see that some get relief From: Dalton Garis malugss...@gmail.com To: pat cooley patticoole...@gmail.com; pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au; TM list tmic-list@eskimo.com Sent: Sunday, January 1, 2012 11:13 AM Subject: Re: [TMIC] RE Pins and Needles The best way to keep warm without getting that pins and needles feeling for me; Is to just wear my flannel pajamas under my pants. They are loose, soft and smooth, and don't trigger those fiery attacks that send me into seizures. Dalton From: pat cooley patticoole...@gmail.com Date: Sun, 1 Jan 2012 09:45:47 -0600 To: pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au, TM list tmic-list@eskimo.com Subject: Re: [TMIC] RE Pins and Needles Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 1 Jan 2012 07:49:01 -0800 Patti I have found that the cold is much worse for me. I have found that if I wear soft long underwear under my jeans it doesn't bother me and helps to keep me warmer. I too always have the pins needles plus the burning/freezing all the time, but it is so much worse in the evening.. I believe that I have learned to live with it since I am able to fall asleep and stay asleep all night except to go potty at least once maybe twice. I have also been told by doctors that the pins needles in the feet is called neuropathy, which is the same nerve pain that people with diabetes suffer from. I have a good friend with diabetes and has suffered with it for years. Patti in Wisconsin On Sat, Dec 31, 2011 at 9:22 PM, pjv1...@chartermi.net wrote: Gilly You are right to remide us about cothes, shoes and sock contributing to our TM pain. I think I've posted for eight straight winters that wearing blue jeans in cold weather puts me right to bed due the the intense pain the cold material causes. New TMers beware! It isn't just the heat that causes additional painful sensations. The cold weather causes its own set of problems. Patti - Michigan On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote: John, the sad fact is that nothing really takes it away, I have so far racked up a bit over 10 years of it. I must say though that I do believe it has decreased somewhat. Either that or I'm just used to it. I don't do meds as all they did was make me completely spaced out or zombie like and the pain was still there. Strangely enough, just the everyday little old aspro or Panadol help. Maybe because they concentrate on any other unrelated pain that then lessons the tm residuals. I have no idea why, I just know that's what happens for me. There are other external causes. The shoes you wear, your socks (always wear them inside out), the clothes you wear, particularly the type of material. I found that by paying attention to these things, I can lesson (not by a whole lot) these annoying freeze/burn feelings. Gilly - Original Message - From: john snodgrass To: James Berg; pjv1...@chartermi.net Cc: tmic Sent: Saturday, December 31, 2011 7:47 AM Subject: Re: [TMIC] RE Pins and Needles was talking with the neurologist yesterday about the buzzing,vibrating feeling that sometimes go all the way into my chest but stays mainly in my legs and feetwhen its not buzzing it is burning. he called it something but i failed to write it down. I tried MJ but for me,,,it made it intensify! nothing i have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax ,valium,Lyrica alcohol,MJ. scratch that off my to do list. ___ From: James Berg molokai...@gmail.com To: pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Friday, December 30, 2011 4:05 PM Subject: Re: [TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought
Re: [TMIC] RE Pins and Needles
it is good to know the pros and cons of all that we seek to do,then when we succeed or fail we will not be surprised. From: pat cooley patticoole...@gmail.com To: James Berg molokai...@gmail.com Cc: pjv1...@chartermi.net; tmic tmic-list@eskimo.com Sent: Saturday, December 31, 2011 10:33 AM Subject: Re: [TMIC] RE Pins and Needles James when I first got TM I ordered vitamin supplements for TM that came from India. After taking them for a few months, my doctor found that it was affecting my liver. They were concerned and were going to do a liver biopsy . I stopped taking the vitamins and when they did a secon dblood test they found my liver was back to normal and I didn't need the biopsynormal so I will never take things that are made in foreign countries. Patti - Wisconsin On Fri, Dec 30, 2011 at 3:05 PM, James Berg molokai...@gmail.com wrote: Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] HAPPY NEW YEAR!
I HEARD THAT SOME OF YOU ALL WERE SO OLD THAT YOU CAN REMEMBER THE FIRST SUPER BOWEL WHO PLAYED IN THAT ONE? THE LIONS AND THE CHRISTIANS? HA! HAPPY NEW YEAR EVERYONE TRY AND SMILE MORE THIS YEAR LAUGH OUT LOUD WHEN YA CAN From: Kevin Wolfthal wolft...@optonline.net To: Akua a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Sunday, January 1, 2012 12:09 AM Subject: Re: [TMIC] HAPPY NEW YEAR! Wishing you and everyone on the TMIC a Happy and Heathier New Year! Kevin Akua wrote: HAPPY NEW YEAR! Wishing Everyone HEALING, HEALTH, PEACE and PROSPERITY! AKUA --
Re: [TMIC] RE Pins and Needles
was talking with the neurologist yesterday about the buzzing,vibrating feeling that sometimes go all the way into my chest but stays mainly in my legs and feetwhen its not buzzing it is burning. he called it something but i failed to write it down. I tried MJ but for me,,,it made it intensify! nothing i have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax,valium,Lyrica alcohol,MJ. scratch that off my to do list. From: James Berg molokai...@gmail.com To: pjv1...@chartermi.net Cc: tmic tmic-list@eskimo.com Sent: Friday, December 30, 2011 4:05 PM Subject: Re: [TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] re pins and needles
I am truly thankful that we have a variety of things to work with. just read where possibly next year we will have hydrocodone without acetaminophen in it. it will have more hydrocodone but without the liver damage. From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; Bernie bpe...@austin.rr.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 9:23 AM Subject: Re: [TMIC] re pins and needles John; Your point is well taken. I also had difficulty going on Lyrica, but I hung in there and continued with it because the pain under my skin all over my body gave me no choice. Before Lyrica, I could not sleep or work; I felt as though I were being fried with high amperages of electricity. I could only just lay there in awful pain. And since I had broken my back in an industrial accident which bent me backwards until I couldn't see below my chest, I have adjusted what I consider to be painful. The Lyrica killed the pain. As for getting off it, why would I do that? Its addiction is a mute point for me, since living pain-free is itself addictive; so that I would become immediately addicted to whatever removes this awful pain. Dalton (718) 838-0437 From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Tue, 27 Dec 2011 04:52:09 -0800 (PST) To: Bernie bpe...@austin.rr.com, Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] re pins and needles I personally had no good experience with it. I had no bad experience with it. Just another one of those trials for me that didnt help out Somewhere I read where someone else loved it. From: Bernie bpe...@austin.rr.com To: Dalton Garis malugss...@gmail.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 6:25 AM Subject: Re: [TMIC] re pins and needles Not trying to scare off anyone considering taking this medication, but one has to be very careful with Lyrica, it has some very nasty side effects. Make sure your doctor starts you on a low dose and that you and your doctor monitor yourself very closely for these. Make a list of all of them and keep it handy. I was put on Lyrica and it made my life horrendous with a lot of misery until they could get me off of it. One also has to be weened off Lyrica, abrupt stopping of the taking of this medication can actually kill you. Here are a couple of links that tells you about Lyrica for you and your doctor to consider:: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ http://en.wikipedia.org/wiki/Pregabalin
Re: [TMIC] re pins and needles
I personally had no good experience with it. I had no bad experience with it. Just another one of those trials for me that didnt help out Somewhere I read where someone else loved it. From: Bernie bpe...@austin.rr.com To: Dalton Garis malugss...@gmail.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 6:25 AM Subject: Re: [TMIC] re pins and needles Not trying to scare off anyone considering taking this medication, but one has to be very careful with Lyrica, it has some very nasty side effects. Make sure your doctor starts you on a low dose and that you and your doctor monitor yourself very closely for these. Make a list of all of them and keep it handy. I was put on Lyrica and it made my life horrendous with a lot of misery until they could get me off of it. One also has to be weened off Lyrica, abrupt stopping of the taking of this medication can actually kill you. Here are a couple of links that tells you about Lyrica for you and your doctor to consider:: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ http://en.wikipedia.org/wiki/Pregabalin
Re: [TMIC] re pins and needles
Susan your to funny. I have been curious about it and have been encouraged by several sources,including in this group to give it a try. perhaps since i am in so much pain it would not do me like it done me when i was a kid and just done it for fun. I was a deadbeat,deadhead,lazy butt back then because of it. now i am beat dead and a butt head,just the opposite,so perhaps I shall surf the neighborhood and find some help. From: Susan Kleinz skle...@cox.net To: Gillian Clark mingalett...@activ8.net.au Cc: TM list tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 9:59 AM Subject: Re: [TMIC] re pins and needles okay, first time I have heard of MJ My neurologist wrote me a prescription for it! however, even though it was voted yes in Arizona, the Federal Government has put a stop on it. It works better than anything for me. And, it's true, alcohol is an analgesic and it definitely kills pain also. See you all at AA! just kidding. Susan Kleinz, Phx On Dec 26, 2011, at 6:22 PM, Gillian Clark wrote: Dear pHran3quee, The most excellent advice as usual!!! I find that Scotch works nicely too. Seems to have less side effects than most meds too :) Of course, nothing really beats a bit of MJ Gilly - Original Message - From: fr...@franksheldon.com To: Gerry Surette ; tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 7:43 AM Subject: Re: [TMIC] re pins and needles my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it? Gerry, I find that Bourbon works best to decrease pain and pins/needles. Bourbon mixed well with mint, but few medications. Happy Holidays. Oh, cutting your feet off actually intensifies the discomfort (phantom limb pain). Frank
Re: [TMIC] re pins and needles
jeepers Pamthat stopped my ears up! dr told me that the tm would aggravate the arthritis in my spine and that the arthritis would aggravate the tm. and the bees aggravate the birds and the birds aggravate the bees. but chocolate and peanut butter go well together. From: PAMELA S subers...@msn.com To: jcs...@yahoo.com; malugss...@gmail.com; bpe...@austin.rr.com; TMC Group tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 2:35 PM Subject: RE: [TMIC] re pins and needles Dalton; I think the back injury is probably more accountable for many of your symptoms than TM. Or maybe TM was a symptom of the back injury. Norco has reduced acetaminophen in it with hydrocodone, but there is still a little bit. lyrica didn't do anything for me. Neurontin or gaberpentin (sic) is predecessor or pregabulin Lyrica. And, there are a lot of people out there who develop nasty side effects with the stuff. I definitely doesn't work for everyone. But, the broken back fits into the category of what used to be called Causalgia or now reflex sympathetic dystrophy. And, that's a whole other animal. Date: Tue, 27 Dec 2011 07:51:59 -0800 From: jcs...@yahoo.com Subject: Re: [TMIC] re pins and needles To: malugss...@gmail.com; bpe...@austin.rr.com; tmic-list@eskimo.com I am truly thankful that we have a variety of things to work with. just read where possibly next year we will have hydrocodone without acetaminophen in it. it will have more hydrocodone but without the liver damage. From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; Bernie bpe...@austin.rr.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 9:23 AM Subject: Re: [TMIC] re pins and needles John; Your point is well taken. I also had difficulty going on Lyrica, but I hung in there and continued with it because the pain under my skin all over my body gave me no choice. Before Lyrica, I could not sleep or work; I felt as though I were being fried with high amperages of electricity. I could only just lay there in awful pain. And since I had broken my back in an industrial accident which bent me backwards until I couldn't see below my chest, I have adjusted what I consider to be painful. The Lyrica killed the pain. As for getting off it, why would I do that? Its addiction is a mute point for me, since living pain-free is itself addictive; so that I would become immediately addicted to whatever removes this awful pain. Dalton (718) 838-0437begin_of_the_skype_highlighting(718) 838-0437 end_of_the_skype_highlighting From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Tue, 27 Dec 2011 04:52:09 -0800 (PST) To: Bernie bpe...@austin.rr.com, Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] re pins and needles I personally had no good experience with it. I had no bad experience with it. Just another one of those trials for me that didnt help out Somewhere I read where someone else loved it. From: Bernie bpe...@austin.rr.com To: Dalton Garis malugss...@gmail.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 6:25 AM Subject: Re: [TMIC] re pins and needles Not trying to scare off anyone considering taking this medication, but one has to be very careful with Lyrica, it has some very nasty side effects. Make sure your doctor starts you on a low dose and that you and your doctor monitor yourself very closely for these. Make a list of all of them and keep it handy. I was put on Lyrica and it made my life horrendous with a lot of misery until they could get me off of it. One also has to be weened off Lyrica, abrupt stopping of the taking of this medication can actually kill you. Here are a couple of links that tells you about Lyrica for you and your doctor to consider:: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ http://en.wikipedia.org/wiki/Pregabalin
Re: [TMIC] re pins and needles
perhaps i stopped taking it prematurely. i stopped after one week. then again wouldn't i have to wean myself off of everything else first to know if something else worked? From: James Berg molokai...@gmail.com To: PAMELA S subers...@msn.com Cc: jcs...@yahoo.com; malugss...@gmail.com; bpe...@austin.rr.com; TMC Group tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 2:56 PM Subject: Re: [TMIC] re pins and needles I agree with Dalton-Lyrica is my drug of choice. But please understand that you will not appreciate what Lyrica does until it builds up a level in your system and that takes about two weeks. Bacofen, neurotin etc, etc did nothing for me even in large doses. I hate narcotics but have found that a couple glasses of wine in the evening makes for a pleasant nights sleep. On Tue, Dec 27, 2011 at 9:35 AM, PAMELA S subers...@msn.com wrote: Dalton; I think the back injury is probably more accountable for many of your symptoms than TM. Or maybe TM was a symptom of the back injury. Norco has reduced acetaminophen in it with hydrocodone, but there is still a little bit. lyrica didn't do anything for me. Neurontin or gaberpentin (sic) is predecessor or pregabulin Lyrica. And, there are a lot of people out there who develop nasty side effects with the stuff. I definitely doesn't work for everyone. But, the broken back fits into the category of what used to be called Causalgia or now reflex sympathetic dystrophy. And, that's a whole other animal. Date: Tue, 27 Dec 2011 07:51:59 -0800 From: jcs...@yahoo.com Subject: Re: [TMIC] re pins and needles To: malugss...@gmail.com; bpe...@austin.rr.com; tmic-list@eskimo.com I am truly thankful that we have a variety of things to work with. just read where possibly next year we will have hydrocodone without acetaminophen in it. it will have more hydrocodone but without the liver damage. From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; Bernie bpe...@austin.rr.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 9:23 AM Subject: Re: [TMIC] re pins and needles John; Your point is well taken. I also had difficulty going on Lyrica, but I hung in there and continued with it because the pain under my skin all over my body gave me no choice. Before Lyrica, I could not sleep or work; I felt as though I were being fried with high amperages of electricity. I could only just lay there in awful pain. And since I had broken my back in an industrial accident which bent me backwards until I couldn't see below my chest, I have adjusted what I consider to be painful. The Lyrica killed the pain. As for getting off it, why would I do that? Its addiction is a mute point for me, since living pain-free is itself addictive; so that I would become immediately addicted to whatever removes this awful pain. Dalton (718) 838-0437begin_of_the_skype_highlighting(718) 838-0437 end_of_the_skype_highlighting From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Tue, 27 Dec 2011 04:52:09 -0800 (PST) To: Bernie bpe...@austin.rr.com, Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] re pins and needles I personally had no good experience with it. I had no bad experience with it. Just another one of those trials for me that didnt help out Somewhere I read where someone else loved it. From: Bernie bpe...@austin.rr.com To: Dalton Garis malugss...@gmail.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 6:25 AM Subject: Re: [TMIC] re pins and needles Not trying to scare off anyone considering taking this medication, but one has to be very careful with Lyrica, it has some very nasty side effects. Make sure your doctor starts you on a low dose and that you and your doctor monitor yourself very closely for these. Make a list of all of them and keep it handy. I was put on Lyrica and it made my life horrendous with a lot of misery until they could get me off of it. One also has to be weened off Lyrica, abrupt stopping of the taking of this medication can actually kill you. Here are a couple of links that tells you about Lyrica for you and your doctor to consider:: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ http://en.wikipedia.org/wiki/Pregabalin
Re: [TMIC] re pins and needles
my own experience was when i had the buzz in my feet,when i warmed them up it felt like they were sunburn. From: Ryota Nishino write2ry...@gmail.com To: tmic-list@eskimo.com Sent: Monday, December 26, 2011 4:21 PM Subject: Re: [TMIC] re pins and needles Hello Gerry and TMIC members, How about warming up your feet? In my experience warmth but not excessive heat can alleviate the conditions if not 'cure it' as such. Good luck. Let me know how you get on. Ryota On 27/12/11 9:18 AM, Gerry Surette wrote: my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it?
Re: [TMIC] Sativex is slowly coming
well I hope we hear from it soon from people in our exact condition. seen on the news this morning that stem cell deals were happening again,and not embryonic but straight from a good brain to a brain that needs instructions on nerve regrowth. perhaps in the next 10 years we will actually see something that makes a difference in our lives. From: fr...@franksheldon.com fr...@franksheldon.com To: tmic-list@eskimo.com Sent: Thursday, December 22, 2011 8:05 AM Subject: [TMIC] Sativex is slowly coming Sativex® approved in Sweden for the treatment of spasticity due to Multiple Sclerosis (MS) Porton Down, UK; 22nd December 2011: GW Pharmaceuticals plc (AIM:GWP) today announced that the Medical Products Agency in Sweden has granted regulatory approval for Sativex® (Delta-9-Tetrahydro-cannabinol (THC) and Cannabidiol (CBD)) oromucosal spray as a treatment of moderate to severe spasticity due to MS in patients who have not responded adequately to other anti-spasticity medicationi. Sativex® is a first in class endocannabinoid system modulator and is currently available in the UK, Germany, Spain and Denmark. Evidence generated from clinical trials shows that Sativex® has a positive impact on spasticity in multiple sclerosis, while alleviating associated symptoms including pain, bladder or sleep disturbance. By relieving the symptoms of MS, Sativex® can improve patients' quality of life and allow them greater independence in performing their daily activitiesii.
Re: [TMIC] Homeopathic treatment for TM symptoms
i actually took 51000 UI of vit D per week. I thought that was overkill but after reading from one of the top medical organizations that OTC vit D was easier to digest and the vit D that is prescribed only digests about half way, i understood why so much. but it didnt make any difference in the way i feel. perhaps it would help me when i am 90 years old. i will wait until then for my regrets. From: Janice Nichols jan...@centurytel.net To: Susan Kleinz skle...@cox.net Cc: ryota nishino write2ry...@gmail.com; tmic-list@eskimo.com Sent: Tuesday, December 20, 2011 10:41 AM Subject: Re: [TMIC] Homeopathic treatment for TM symptoms Thanks, I appreciate that. You did a pretty good job explaining it! I have an appointment with my doc next month, think I will talk to him about it. I do regular blood tests, but don't know if he checks for that. Thanks, Janice -Original Message- From: Susan Kleinz Sent: Tuesday, December 20, 2011 9:30 AM To: Janice Nichols Cc: ryota nishino ; tmic-list@eskimo.com Subject: Re: [TMIC] Homeopathic treatment for TM symptoms Apparently, most people with TM are deficient in B-12 I was tested and I had none - and the shots make me feel way better - the B-12 pill did not work. I was also deficient in Vit. D - they say most people are. once again, I was way low. Yes, women need testosterone also, to build muscle mass. They tested progresterone, estrogen and testosterone, I had no testosterone at all. Mu neurologist suggested B-12 and Vit D also. and was happy I'm on them. clear as mud? Susan On Dec 19, 2011, at 10:51 PM, Janice Nichols wrote: Susan, what are the B12 shots supposed to do? Surely, women don't take testosterone shots? Why so much Vit D? Janice -Original Message- From: Susan Kleinz Sent: Monday, December 19, 2011 9:15 PM To: ryota nishino Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Homeopathic treatment for TM symptoms hello Ryota and all: I have been just listening. Homeopathy is no longer controversial. My father owns a health food store in Phoenix, AZ (for 55 years) I was diagnosed in Feb. 2011 - too late for steroids, also, This is what has helped me: from my neurologist, Roberto Bomprezzi, at Barrows Neurological Institute in Phoenix, Arizona Specialist in Multiple Sclerosis and Transverse Myelitis. Baclofen - for muscle spasms Neurontin - for pain (developed for epilepsy) Zoloft -seratonin Savella - developed for fibro myalgia all prescription drugs... From my; Naturpath in Scottsdale, AZ - Integrative Health/Dr. Alan Christianson B12 shots twice a week 5,000 Vitamin D daily Testosterone shots every six weeks (all shown deficient in lab work) I feel our disease requires more than homeopathy. However, it is a good combination. You must find a specialist in TM Have you joined the TM Association? They send great info to help clarify what exactly you have. We are rare birds. Susan Kleinz Age 57, married, 3 children, Phx, AZ Can you cone to the USA? On Dec 19, 2011, at 4:50 PM, ryota nishino wrote: Hello, A few people suggested I look into homeopathic treatment for TM symptoms. In particular, I was suggested to take: tissue salts (Combination F, mag. phos.; kali. phos.; nat. mur.), arnica (to take as pills) and St John's Wart. Has anyone tried these? Anything to report on? Of course, I am aware that the efficacy of homeopathy is very controversial. Either way, we have the big pharma and the 'alternative' medicine guru who await our custom. My initial TM attack was October last year and diagnosis two months later. So that I am late for steroids, which may actually be a good thing after hearing so many horror stories about the steroids. Yours, Ryota Nishino
Re: [TMIC] Homeopathic treatment for TM symptoms
i still take baclofin and atavan and narcotics. i weaned myself off of neuronton after 3 years...what it was helping had stopped and i didnt feel any different pain wise after i stopped. it also made me very agitated. a friend of mine takes B12 like candy. swears by it.he talks non stop. then i read that to much is to much. From: Susan Kleinz skle...@cox.net To: ryota nishino write2ry...@gmail.com Cc: tmic-list@eskimo.com Sent: Monday, December 19, 2011 10:15 PM Subject: Re: [TMIC] Homeopathic treatment for TM symptoms hello Ryota and all: I have been just listening. Homeopathy is no longer controversial. My father owns a health food store in Phoenix, AZ (for 55 years) I was diagnosed in Feb. 2011 - too late for steroids, also, This is what has helped me: from my neurologist, Roberto Bomprezzi, at Barrows Neurological Institute in Phoenix, Arizona Specialist in Multiple Sclerosis and Transverse Myelitis. Baclofen - for muscle spasms Neurontin - for pain (developed for epilepsy) Zoloft -seratonin Savella - developed for fibro myalgia all prescription drugs... From my; Naturpath in Scottsdale, AZ - Integrative Health/Dr. Alan Christianson B12 shots twice a week 5,000 Vitamin D daily Testosterone shots every six weeks (all shown deficient in lab work) I feel our disease requires more than homeopathy. However, it is a good combination. You must find a specialist in TM Have you joined the TM Association? They send great info to help clarify what exactly you have. We are rare birds. Susan Kleinz Age 57, married, 3 children, Phx, AZ Can you cone to the USA? On Dec 19, 2011, at 4:50 PM, ryota nishino wrote: Hello, A few people suggested I look into homeopathic treatment for TM symptoms. In particular, I was suggested to take: tissue salts (Combination F, mag. phos.; kali. phos.; nat. mur.), arnica (to take as pills) and St John's Wart. Has anyone tried these? Anything to report on? Of course, I am aware that the efficacy of homeopathy is very controversial. Either way, we have the big pharma and the 'alternative' medicine guru who await our custom. My initial TM attack was October last year and diagnosis two months later. So that I am late for steroids, which may actually be a good thing after hearing so many horror stories about the steroids. Yours, Ryota Nishino
Re: [TMIC] Homeopathic treatment for TM symptoms
well now thats certainly a good and honorable thought. I remember when i was working that the super would always tell people in the fall of the year to start loading up on the goodies that will keep you well in the winter. just makes sense. shame on me for not doing this sense i have been off the fireing line. it is hard enough on us on a good day. thank you for that common sense reminder! From: pjv1...@chartermi.net pjv1...@chartermi.net To: Janice Nichols jan...@centurytel.net Cc: Susan Kleinz skle...@cox.net; ryota nishino write2ry...@gmail.com; tmic-list@eskimo.com Sent: Tuesday, December 20, 2011 7:42 PM Subject: Re: [TMIC] Homeopathic treatment for TM symptoms My husband also had no vitamin D and was put on 5000 IU daily. I tested ok to the surprise of the Endocronologist who promised me that I would be low, because we live in Michigan. I spend as much time out-of-doors as possible in the summer. My B12 is always OK too. However, I just added a product called Emergen -C to our daily regimine. It's a powder that is added to a glass of water. It fizzes for a minute or two and has a citrus taste. I hate taking vitamins along with my various TM meds and never stick with them. I hope this immunne booster will help keep us from catching every cold, cough, and sneeze bug that passes our way. Please let me know if you have had any experience with this product or know of another that is easy to digest. Patti - Michigan On Tue, Dec 20, 2011 at 10:41 AM, Janice Nichols wrote: Thanks, I appreciate that. You did a pretty good job explaining it! I have an appointment with my doc next month, think I will talk to him about it. I do regular blood tests, but don't know if he checks for that. Thanks, Janice -Original Message- From: Susan Kleinz Sent: Tuesday, December 20, 2011 9:30 AM To: Janice Nichols Cc: ryota nishino ; tmic-list@eskimo.com Subject: Re: [TMIC] Homeopathic treatment for TM symptoms Apparently, most people with TM are deficient in B-12 I was tested and I had none - and the shots make me feel way better - the B-12 pill did not work. I was also deficient in Vit. D - they say most people are. once again, I was way low. Yes, women need testosterone also, to build muscle mass. They tested progresterone, estrogen and testosterone, I had no testosterone at all. Mu neurologist suggested B-12 and Vit D also. and was happy I'm on them. clear as mud? Susan On Dec 19, 2011, at 10:51 PM, Janice Nichols wrote: Susan, what are the B12 shots supposed to do? Surely, women don't take testosterone shots? Why so much Vit D? Janice -Original Message- From: Susan Kleinz Sent: Monday, December 19, 2011 9:15 PM To: ryota nishino Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Homeopathic treatment for TM symptoms hello Ryota and all: I have been just listening. Homeopathy is no longer controversial. My father owns a health food store in Phoenix, AZ (for 55 years) I was diagnosed in Feb. 2011 - too late for steroids, also, This is what has helped me: from my neurologist, Roberto Bomprezzi, at Barrows Neurological Institute in Phoenix, Arizona Specialist in Multiple Sclerosis and Transverse Myelitis. Baclofen - for muscle spasms Neurontin - for pain (developed for epilepsy) Zoloft -seratonin Savella - developed for fibro myalgia all prescription drugs... From my; Naturpath in Scottsdale, AZ - Integrative Health/Dr. Alan Christianson B12 shots twice a week 5,000 Vitamin D daily Testosterone shots every six weeks (all shown deficient in lab work) I feel our disease requires more than homeopathy. However, it is a good combination. You must find a specialist in TM Have you joined the TM Association? They send great info to help clarify what exactly you have. We are rare birds. Susan Kleinz Age 57, married, 3 children, Phx, AZ Can you cone to the USA? On Dec 19, 2011, at 4:50 PM, ryota nishino wrote: Hello, A few people suggested I look into homeopathic treatment for TM symptoms. In particular, I was suggested to take: tissue salts (Combination F, mag. phos.; kali. phos.; nat. mur.), arnica (to take as pills) and St John's Wart. Has anyone tried these? Anything to report on? Of course, I am aware that the efficacy of homeopathy is very controversial. Either way, we have the big pharma and the 'alternative' medicine guru who await our custom. My initial TM attack was October last year and diagnosis two months later. So that I am late for steroids, which may actually be a good thing after hearing so many horror stories about the steroids. Yours, Ryota Nishino
Re: [TMIC] How to educate medical prodessionals
yeah JB i heard something about some winter in the planes,,thank God for right here right now! No i trust that the planes will by the integrity of their nature will come out on top as always.. I looked and I tried and I looked and I tried to find a way to get back to work tomorrow! Im not going back to work tomorrow. but as long as I am here i will look for ways to make tomorrow work today! (someone remind me of that on my next OMG this spasm is killing mg me segment) From: bobberino elbobber...@earthlink.net To: pjv1...@chartermi.net; tmic tmic-list@eskimo.com Sent: Tuesday, December 20, 2011 7:49 PM Subject: Re: [TMIC] How to educate medical prodessionals My wife's first attack was on 97 September, just before we were about to move from EssEff to Memphis. She had a second attack at a different spot in 99 Feb. She went on Avonex the following month, and still gets an injection every 8 or 9 dayze. She's not been 'cured' but can function almost normally, except for fatigue, and the hot summers don't help one bit heat slows her down but doesn't stop her. To all of you waiting for a 'quick fix'. am afraid there just ain't one, not just yet. But hang in there, one step at a time. And write to any of us when you need to vent. BobbyJim in Elvisland, where it hit 62º today... some winter, eh. - Original Message - From: pjv1...@chartermi.net To: tmic Sent: Friday, December 16, 2011 9:04 PM Subject: [TMIC] How to educate medical prodessionals One of the best tools that I have used in talking to my doctors is repeating something that I learned from someone in TMIC, my online support group. I quote some of you. I ask my doctors about the meds some of you are taking. I Show the combinations that are working and let my doctor that I'm not the only TM patient with such and such a symptom. I asked my doctor about Lyrica after reading about it from people on TMIC. The same thing happened when some of you had success with Cymbalta. My doctor's have been impressed with the knowledge of our group. My personality was effected by TM. TM was a humbling experience. My brain was clouded and fuzzy. I stumbled and bumped into walls. My income was cut in half. I became a housewife instead of having the prestige of my 35 year career. There were times I had a hard time thinking of words or forming a complete sentence. I felt lke a zombie. I've come a long, long way in my eight years with TM, but when I first had TM and Barbara Harper told me she was still getting better after eight I was appalled. I had been a goal oriented person and I was seeking a quick-fix answer. The oldies on TMIC know there is no quick-fix for TM. We have found happiness in something besides ourselves. It isn't mind over matter. It isn't getting over yourself as one friend said to me. It's accepting who you are right now and hoping it will get better. I have improved year after year after year. My life changed, but I appreciate much more now than I did eight years ago when I thought I was on top of the world. HOPE! Patti - Michigan
