Re: [TMIC] Unidentified subject!
Dalton, I will be having my bone density test soon. I've had osteopenia since before TM and developed jaw bone problems after one of the early osteo drugs given to women years ago. I think that med was removed from the market and I have gently refused any of the new meds since. I'll have to make a decision again when my new PCP gets my report. However, I'll feel more comfortable discussing it this time, because I chose a female doctor who may also face the same decision as she ages. Keep us informed and if anything changes I'll post an update. Patti - Michigan On Jan 26, 2015, at 9:13 AM, Suerdlagpunga suerdlagpu...@gmail.com wrote: Friends, I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis. I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time. My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff. Has anyone had experience taking any kind of osteo medicine, and what were the side effects? Thanks, Dalton Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
Baclofen reduces banding greatly for me. I remember Rob's posts when he made the decision to try the Baclofen pump, the operation, and the dosage changes. Rob, I wish it had continued to work for you without having other complications. Continue your group leadership. I know your group has been successful. Patti - Michigan On Jan 25, 2015, at 5:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC]
Your son was very active on here (along with many of us). I couldn't have survived those early days without the information, encourage, and friendship I received from this Email group. I thank God for Jim Lubin's work behind the scenes for this and the old TM Forum. My Neuro was pleased that I was involved with this support group, although, he had never heard of it before I told him things I was learning from the group. Mrs. R, it's nice to hear from you. On Jan 26, 2015, at 12:50 PM, wrabal...@gt.rr.com wrabal...@gt.rr.com wrote: It has been a pleasant surprise to see so many people doing email.. I started following you all 12 years ago when my son, Dennis ,came down with TM. I hope more of the people that were connecting before face book will come back to the original site. Good luck to all of you. My prayers and thoughts are with all of you. Rebecca
[TMIC] Regarding (Jude) Judy Hoops
I saw that someone inquired about Jude. I know she was recently on Face Book for the first time in a long time. I received a short message from her husband when I commented on a post. I lost track of Jude for almost a year, but I know she has been thru additional illness. Patti - Michigan
Re: [TMIC] Hey everybody,
I'm here and on Face Book. I haven't had any changes in my TM, but I do have an interesting story about a suspected relapse. In December, 2013, I thought I had a TM relapse or a stroke and went to ER walking and talking as if I was in a drunken stupor. CT, MRI's, and Labs showed nothing new had happened and I recovered fine. My doctors and I were stumped. In December 2014, I woke up one morning feeling my TM normal with the start of a cold. I went thru my routine of meds, reading, and coffee. I had difficulty standing up, my walking was bad and felt drunk when I started for another cup of coffee. I again wondered if I was having a TM relapse. I sat and compared the two relapses. I didn't want to go thru another 36 hour observation in ER. I felt and walked and talked as if drunk both times. I had the start of a cold both times. I had taken cough syrup both times, but the bottle was almost empty so it couldn't be that. I didn't have a relapse at all. I had a reaction to taking a full dose of cough syrup with Dextromethorphan and my TM meds Lyrica and Baclofen - on an empty stomach. What a relief! I saw my PCP yesterday for my RX renewals and I think she was as relieved as I was. That means no TM relapses in 11 years. Praise the Lord! Patti - Michigan. On Jan 18, 2015, at 1:12 PM, Susan Kleinz skle...@cox.net wrote: Me too. On a trip but will be responding. ! So glad someone is still out there in our tm group Sent from my iPhone On Jan 17, 2015, at 10:41 AM, malugss...@gmail.com wrote: I'm still here also. Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Janice Nichols Sent: Saturday, January 17, 2015 12:33 PM To: Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Hi Nikki, I remember you! The old group has pretty well disbanded and gone to Facebook , etc. I have had TM for 8 years and there is always something improving. You have to work hard at it and keep moving, but it really pays off. Once in a while the bladder even improves for a hile - and then to the usual, but I will take what I can get. I really wish doctor's would not give a time limit on improvement - we all go at different paces with different problems to deal with. You sound great and I am really proud of all your accomplishments. It couldn't have been easy for you. Keep in touch. Janice Missouri -Original Message- From: Nikki Macleod Sent: Saturday, January 17, 2015 6:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins and needles. I figured this is a good thing considering it is numb until I get these episodes. I've also had episodes of feeling as though the soles of feet are burning like they are on fire. TM struck me on 15/02/2011. Doctors told me after a certain period of time that would be the end of the improvement. I believe that you may continue to improve way after that (I have). Has anyone else experienced anything like this? Nikki, Durham, UK. Sent from my iPad
Re: [TMIC]
My condolences to you. Dennis was loved and appreciated by his TM family and has been and will continue to be missed. I was aware of Dennis' passing thru our TM Facebook page and I'm glad to see that you shared it here on the TMIC. Now, when we remember Dennis, we will remember a Mom who will continue to cry when she remembers her son and our friend. Sincerely, Patti - Michigan On Mar 12, 2014, at 4:57 PM, wrabal...@gt.rr.com wrote: I just realized I had not seen much activity. I am not sure this is going to the group, I hope so. Some of you were probably friends with Dennis Rabalais. He passed away on Jan. 29, 2014. He had been sick for so many years, I know he is in a better place. But as a mother I surely do miss him. Today for no reason I have cried all day. I feel like my heart is broken and it is painful. I thank all of you that talked to Dennis for being his friend. I will try to keep an eye out for any of your post. Bless all of you, Rebecca Rabalais
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
James, Please tell me why you want to reduce to 50mg twice daily after consulting with Sandy. I was taking 100mg 3 times daily for about a year, but reduced to twice daily due to cost, not due to medical reasons. Is there something about Lyrica Sandy made you aware of that I should be concerned about? As you both have stated, we learn more from the TM Association than we learn from our doctors and Neuro's. Patti - Michigan On Mar 12, 2014, at 3:34 PM, James Berg molokai...@gmail.com wrote: Hey Dalton and everyone else, Aloha. I just want folks to know that thanks to Dalton letting me know about Lyrica, I've gotten control of my leg spasms. I'm taking 150mg. 2 times a day and suddenly a week ago my spasms stopped! Not having a neuro so consult with Sandy, yes our Sandy, has been counseling me about stopping the Lyrica and after discussing it with my GP I am doing a gradual reduction and will soon be down to the 50mg. Dalton has reduced to. Lyrica has been a god send to me. Thanks Dalton. Jim On Wed, Mar 12, 2014 at 7:48 AM, Janice Nichols jannic...@gmail.com wrote: Dalton - not offended!! So glad you are doing so well.Isn’t it strange the things we discover ourselves that help us?Doctors can still be so clueless about some things - on the other hand, they can save our lives! Janice From: Dalton Garis Sent: Wednesday, March 12, 2014 11:26 AM To: Linda Egli ; tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Say, Folks! Nice to hear a voice crying in the wilderness. I am still here, also. By the way, someone hacked my Facebook so had to change my name, to Abdu’l-Hanif Al-Shukri – let them try to hack that one! So, if you remember me, for instance Meiling, and you want to “friend me, I’m still out there. Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of trying. Can’t go below that amount, discovering that is what is actually required to cover most of the pain. My memory is better and am less anxious about losing my mind to fog and dopiness. And went 28 days without a seizure, the longest time since getting the first one in 22 April 2010. Want to know what reduced their frequency? - not taking all those vitamin supplements anymore. It seems the minerals in them were interfering in some way with the nerves, especially magnesium. Visiting my mother in Massachusetts – she’s 97 – I forgot to bring any and went without for a week. Returning home I realized that I hadn’t had any seizures, and guessed that the only change was in not taking all those vitamin supplements. So I stopped, and sure enough, the seizures became very infrequent. Who knew? Now is the Baha’i month of the Fast, when Baha’is go without food and drink during the hours when the sun is in the sky, for 19 days, the last month of our year. (In our calendar there are 19 months of 19 days, with 4 or 5 inter calendar days just before the month of the Fast). We eat and drink after sunset or before sunrise but not during the hours of sunlight. Smoking is also prohibited, as it is considered a form of drink. The sick, the traveling, those nursing or pregnant, or under the age of 15 or older than 70 are not bound by the Fast; neither are those engaged in heavy labor. It is for those in good health, but others are not bound to it. While not bound by the Fast I am going without food during the hours of fasting but drinking tea or coffee or water whenever I feel the need. It is going OK, and does change the relationship to the material world and increase nearness to God. I am grateful to participate at even this level. I hope it doesn’t upset anyone if I talk openly about God. It seems our America is conspiring to wipe any mention of Him from any public discourse – a kind of propaganda in its own right if you think about it. I apologize, though, if anyone here is offended. Love and prayers, Dalton Abdu’l-Hanif Al-Shukri Dalton Garis Flushing, Queens New York, USA From: Linda Egli le...@sbcglobal.net Reply-To: Linda Egli le...@sbcglobal.net Date: Wed, 12 Mar 2014 07:45:18 -0700 (PDT) To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 12 Mar 2014 07:45:20 -0700 (PDT) Another TMer still here too. I miss the people that used to use this site. Stay well. Linda - Texas From: Janice Nichols jannic...@gmail.com To: James Berg molokai...@gmail.com; tmic-l...@eskimo.net Sent: Wednesday, March 12, 2014 9:39 AM Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii You are not alone here. wlEmoticon-smile[1].pngI am still here, but it sure is quiet! Hope you are doing well. Janice – from Missouri From: James Berg Sent: Wednesday, March 12, 2014 1:52 AM To: tmic-l...@eskimo.net
Re: [TMIC] This is amazing and every paraplegic should get one from Medicare!!!
Bernie, I don't use a wheel chair, but I watched the video yesterday and think it is a much needed item for some of our TM friends. Patti - Michigan On Jan 21, 2014, at 4:56 PM, Bernie Pelow bpe...@austin.rr.com wrote: This is amazing and every paraplegic should get one from Medicare!!! http://www.wimp.com/newdevice/ When will the Tek RMD be available? We expect that the Tek RMD will begin shipping by the end of 2013. We are currently taking reservations. How do I reserve a device? Reserve your Tek RMD online at our reservation page. A reservation requires a down payment, which is fully refundable should you change your mind at any point before we ship. Once we begin shipping the Tek RMD in the United States, we will fulfill reservations in the order in which they were received. You will pay the remaining balance on your device approximately two weeks prior to shipping.If you have any questions or concerns about the reservation process, please contact us by phone at 1.630.447.8263 or by email at i...@matiarobotics.com. How much does the Tek RMD cost? We expect the final price to be approximately $15,000 US not including shipping charges.
Re: [TMIC] SSDI - Doc
Was It available on Jim Lubin's site? I read the FBk post of the lady who can't get qualified and didn't feel that I had anything to add. It seems like there was something about having two limbs that are effected. I'll look too, however, I know you have so better chance of finding it than I do. Patti - Michigan On Jan 4, 2014, at 4:22 PM, cindy mcleroy cindymcle...@socal.rr.com wrote: Year's ago an attorney from Texas wrote a message on how to qualify for SSDI. He gave the section of the SSDI rules that would allow many of us to qualify first time. Does anyone remember the message and how I can find it again. Thanks, Cindy McLeroy
Re: [TMIC] SSDI - Doc
The link Barbara gave is the one I was thinking of. I even had a copy of it in my 5 to 10 year old notebook. The highlighted info is what gave me hope when I applied. It also has a statement about two extremities being impaired. Patti On Jan 4, 2014, at 6:06 PM, Barbara H. barbara...@gmail.com wrote: There used to be - I was poking around the site just now and couldn't find it. A man named Roger (I can't remember his last name) who went by Doc on here before he passed away made up a list of very specific tips for applying. There is a section on the forum for dealing with disability, and I found this link there - not sure if it is Doc's but it looks helpful: http://myelitis.org/resources/disabilityapp.htm Something else that's odd - I don't see any link to the TMIC on the TMA web site. There is a link for individual state support groups and the message board, or forum, at myelitis.org/forum, but not this list. Barbara H. On Sat, Jan 4, 2014 at 4:22 PM, cindy mcleroy cindymcle...@socal.rr.com wrote: Year's ago an attorney from Texas wrote a message on how to qualify for SSDI. He gave the section of the SSDI rules that would allow many of us to qualify first time. Does anyone remember the message and how I can find it again. Thanks, Cindy McLeroy
Re: [TMIC] Happy New Year
eHappy New Year to you. I find the TMIC web site is never real busy anymore. It seem everyone has gone over to the Face Book groups On Tue, Dec 31, 2013 at 9:48 AM, fatimah shehadeh fatimah.sheha...@gmail.com wrote: Happy new year to all. Tima On Tue, Dec 31, 2013 at 9:00 AM, Nikki Macleod nmacleo...@yahoo.co.ukwrote: Hi everyone just a quick message to wish you all a very happy new year and best wishes for 2014. I hope you all had a lovely Xmas and have managed to avoid any health problems. I've noticed it's been rather quiet but I expect everyone is so busy at this time of year. Best wishes, Nikki UK. Sent from my iPhone
Re: [TMIC] End of birthday lists
Thanks Barbara. You are correct in all your reasons. I'm still here on TMIC as well as on FBk and that's where I try to remember to send birthday greetings. Patti - Michigan On Dec 31, 2013, at 8:46 AM, Barbara H. barbara...@gmail.com wrote: Hello all, Some of you may remember how the birthday lists started many years ago. Someone found an online site that would send e-cards to others as a support for a charity, so many of us sent in our names and birthdays so as to use the site to raise funds for the TMA. Not surprisingly, the site died after a while. A girl on the TMIC named Carrie and I had accumulated the birthday names and lists, and after she left the list, I continued to send them out once a month. I've decided to stop doing so, for a number of reasons. 1) Not many people are here any more. Many are on Facebook and it is easy to send birthday greetings there. 2) I don't think many (if any) people use the birthday list to send individual greetings to anyone on it. (A few of you have faithfully sent happy birthdays on TMIC to those celebrating each month as a whole, and I have appreciated that.) 3) Since all mail that goes through the TMIC is archived online, I have wondered if it is a problem to have lists of names and e-mails there, if that increases anyone's spam content. 4) I have been sending out individual birthday greetings to everyone on the list, and more and more of them are returned to me because the address is no longer active. 5) For those who are no longer on the TMIC, I don't know if they welcome the birthday greetings or if they don't want me to bug them any more. So for all of those reasons, plus the amount of time involved, I have decided to stop sending the birthday lists out each month. I've just finished updating it with the latest information I have - if anyone else wants to take it over, I'll be happy to send you the list. I'm still here on the TMIC and plan to continue to be. I wish all of you a very happy and healthy 2014. Love, Barbara H.
Re: [TMIC] December Birthdays
HAPPY BIRTHDAY TO ALL THE CHRISTMAS BABIES. On Mon, Dec 2, 2013 at 7:57 AM, Barbara H. barbara...@gmail.com wrote: Happy birthday to those celebrating in December! 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jannic...@gmail.com) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin (patticoole...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-15 Alton Ryder(a-ry...@comcast.net) 12-18 Rod Jenke (rktje...@chariot.com.au) 12/23 Roger Pratt (r.c.pr...@frontier.com) 12-25 Gilly (Also gillycl...@yahoo.com.au, and trinketgi...@gmail.com), ( mingalett...@activ8.net.au) 12-27 (subers...@msn.com) 12/31 Janet (j.d...@shaw.ca)
Re: [TMIC] Deb's Medical and Work Status
Hi Deb, You have been on quite a journey! Thanks for sharing about your pump experience. My hubby has asked me a few times if I should look into it after I told him about Rob's success. I now refer to my work status as retired due to disability. I'm 63, but like most, I would be much better off financially if TM hadn't forced me out of the work force 10 years ago. I really know how you feel about giving in and crying uncle. It's hard to say, I can't do that anymore. I didn't miss the routine since I couldn't have done it physically or cognitively, but I missed my customers and coworkers. I find enjoyment in being a homemaker. I like having my hubby walk in the house and tell me supper smells good andI I am happy to be able to keep up with the laundry. Small accomplishments feel good. Housework and yard work are my daily exercise. That is my final answer when my doctors ask if I have an exercise routine. I answer smugly, Yes, I do all my own housework and yard work. Enjoy your days away from work. You won't believe how good it feels to have time to do things. Patti - Michigan On Nov 4, 2013, at 12:35 PM, Deb Monteleone aiki...@optonline.net wrote: Hi all, Wanted you to know that I am no longer working. MS got the better of me after a long and tough battle. I just can’t do it anymore; the pain, fatigue, cognitive issues and quality of life won over. They made me say, I don’t care how the bills and health insurance will get paid; I just can’t do it. Those of you that really know me, realize how hard it is for me to say I can’t do something. I know the last update was a while ago but I figured I’d wait until I knew something fairly final. Here is an outline: - Shingles (on belly) decided to get in the action, only good thing is my Neurontin pain medication made it less painful. Although it still woke me up once or twice and threw some extra pain in during the day. I found it just soon enough (just past 72 hours) to take the medication for it so it didn’t get worse. - Had pain pump put in June 5th. - The Medication put in was the Prialt, snail venom, or as I like to call it escargot juice J. o This process took forever as they increase the amount very slowly. o Gave me allergic reaction to band aide adhesive. No more cuts for me J! o I had my first hallucination ever, content wasn’t scary but realizing I had it sitting at my desk, that scared me. o Had a psychotic episode with my Neurologists answering machine. Thank god that was on the day he turned it way down to remove the next day. - Next medication was baclofen which I was taking orally. We finally found the correct dosage. No more oral pills! - Now onto Morphine. It was late Friday October 4th (yes still working on getting pumps meds correct since June 5th J ) and I was finally hopefully going to get some pain relief from the 1st dosage of morphine. Well, after many pokes, x-ray and sonogram it turns out that the pump rolled over. The port for meds was facing inside me. Now tell me, how did I do that J? - How to get surgery in 12 days. o The surgeon’s assistant was great, by Tuesday I had a CAT scan, appt with surgeon Thursday, hospital pre-op Friday and surgery the next Wednesday. o In addition, that same busy week I had a brain MRI, brought in sample which ended up positive for UTI Friday before surgery. Started antibiotics, spoke with surgeon who said he could still operate as long as antibiotic had a few days to start working. Yes!! - Surgery on Oct 16th went well, combo of baclofen and morphine were put in. Maybe some relief in sight. o My on-call nurse ‘Mom’ took me for the surgery then cared for me at home, this was not her first nursing gig with me, it’s our quality time J. Thanks Mom for being such a good one. o Got home, needed cane to walk in house as my balance was completely off. Got better over the days. No one said this might happen, what the #%! o It did remove the very sharp tips of the pins and needles of which I am grateful for. o My goal is to be able to wear socks and not have my pants hurt either. - Even with the tips of the needles gone I just couldn’t take anymore, my body and brain had given their all. I had been looking into disability for a few weeks, after speaking with benefits at work it was decided Tuesday morning, finalized Wednesday that Thursday would be my last day. I do things quickJ, it was nice to have all 60+ employees together to say my good byes to. o They helped pack up my desk with a cart and two trips to my van. o My feelings about this part have not settled yet but I know in my heart it is what I need to do. It’s time to concentrate on my health. - After leaving work, it was off to the Doctor to increase the morphine a touch. Can’t yet tell if it
Re: [TMIC] Re: Getting a flu shot
Dalton, I hope this is a short-term problem for you and the pain subsides soon. Thanks for the info and keep us informed. I was planning on getting one this year, because I had no adverse reaction to the shot last year. It was my first shot since TM. We had five deaths in our area last year and I turned chicken and got the shot. Patti - Michigan On Oct 5, 2013, at 9:25 AM, Dalton Garis malugss...@gmail.com wrote: Fellow suffers; I can now report on getting a flu shot. So far, it is not good. It is the fifth day and the base pain level, the level of pain experienced all the time without any additional loads, has increased to the extent that even the Lyrica is no longer able to contain it. My body is in a constant state of nerve pain and physical anxiety. I have increased the dosage of both Lyrica and Gabapentin. Hopefully, this is not a new normal; but if it is, then I have made a big mistake in getting a flu shot. Thus, unless you expect to be circulating around many people, and many new people with whom you have not previously spent much time, then, I don't recommend it. But living in New York City and taking the subway and other forms of public transportation, and having to use hand-holds all over the City, I thought it prudent to get the flu shot. It may still be the right move, but at this reckoning has come at a high cost, that of being in a distracting level of pain all the time now, just as I was during the early days of the disease. Dalton Dalton Garis Flushing, Queens New York, USA
[TMIC] Fwd: Michigan walk, run, roll
Begin forwarded message: From: Pat p...@voorheissigns.com Date: October 2, 2013, 7:09:59 AM EDT To: tmic tmic-list@eskimo.com Subject: Michigan walk, run, roll Is anyone on the TMIC going to the Holland, Michigan Saturday for the walk-a-thon? My husband and I are planning to go, but might not participate in the actual walk. Patti - Montrose, MI
Re: [TMIC] Re: TM Exhaustion
Jude I am with you. I have such fatigue that all I want to do is go to bed. There are times when I know I should go potty but I don't have the strength to go. Or the times I would like a drink of water, but again I don't have the energy. I am not one to nap but lately I find that I am laying down in the afternoon. No I am not looking forward to winter. I hate the cold. The best time of the day is when I can crawl under the covers and get warm. The fatigue seems to be so much worse this year. Maybe it is because I am getting older. Keep warm Jude. TMID On Wed, Sep 18, 2013 at 12:51 PM, heyjude48...@aol.com wrote: ** Hi Friends, Are any of you suffering with exhaustion? I am so tired all of the time that I can't stand it. What do you do to rid yourself of this malady? I hope that you have had a nice summer and you are looking forward to a beautiful fall. Winter will soon be here and it will be freezing cold here in Michigan. How does your TM make you feel in the cold weather? I love you, Jude
Re: [TMIC] September Birthdays
Happy birthday to all the September babies, especially to our friend Pam. Pam we all miss you so much. TIAD On Sun, Sep 1, 2013 at 8:08 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in September! Please send any additions or corrections to tmic.l...@eskimo.com. We also want to take a moment to remember Pam Montz, faithful list member who passed away a few years ago. Her birthday was 9/9. 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com ) 09-06 Jake DeGrand (judidegra...@yahoo.com) 9-8 Mary Davidson (keebe...@aol.com) 9/8 Terry Parker (parkersw...@aol.com)* * 9/12 R. J. Rankin (rj_ran...@yahoo.com) 9-16 Mary Eden Cochran (coch6...@bellsouth.net) 9-17 Bill Wimberly- (*bwimbe...@bellsouth.net*) 09/20 Rob Pall (robthe...@aol.com) 9-23 Karen (Mushroo) (mush...@juno.com)(*mushr...@hotmail.com*) 9-24 Suzi in Seattle *(ss1...@aol.com*) 9/26 Allen Rucker *a...@allenrucker.com* 9/30 Patti Enstrom (pge...@aol.com )
Re: [TMIC] A 'sore' subject
Nikki, I also take Baclofen for spasms. I take 3 or 4 daily (10mg each). In the state we have an over the counter cream/ ointment called Neosporin. The tube I have states +pain relief ointment. The print is too small to read, however, you can find it on line. It is a rather small mount for the money, but a little goes a long way and every doctor recommends it for minor cuts. I use an prescription antibiotic ointment on my face for rosacea Metronidazole Tropical Gel. Neither of these burn or sting. Patti - Michigan On Aug 12, 2013, at 3:20 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Well hello there peeps, I need some advice please. I suffer from bad spasms especially in my legs. When my legs spasm they literally lock together at the top and lock. I am now left with really bad sores on the very tops of my legs near my lady parts. I use a barrier cream and sudocrem, any ideas anyone? Nikki Durham, UK Sent from my iPad
Re: [TMIC] August Birthdays!
Happy birthday to all August babies. On Thu, Aug 1, 2013 at 7:39 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the August kids! August is one of our biggest birthday months. Please send any additions or corrections to: 8/1 Peachi (pkeene2...@aol.com) 8/1 Cindy McLeroy (cindymcle...@socal.rr.com) 8-1 Stacy Firth (safi...@dow.com ) 8-3 Larry Throne (lbthr...@hotmail.com ) 8-10 Sean Indiveri (sindiv...@hotmail.com) 8-11 Raylene Gökeri (mrs_gok...@yahoo.com 8-11 Michelle Maricic (mmari...@aol.com) 8/11 Dalida S. Ortiz de Garcia (py...@yahoo.com) 08/17 Sandra (Harth) Brassil (sbras...@aol.com) 8-17 Kim (jnks...@huntel.net) 8-19 Saroj (sarojkumar...@gmail.com) 8-21 Barbara H. (barbara...@gmail.com) 8-23-00 Cole (neilandwe...@rogers.com) 8-29 Kathleen (kathleen.kar...@gmail.com) 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
Re: [TMIC] Friends
I also answer fine when asked how I am and I gave up explaining much about TM. I've told people it's a interesting illness that's impossible to understand, I have said that I'm in constant pain that I take meds for, but I try hard not to dwell on it. I might say there is a lot of info that they can do a google search on if they would like to write down the correct spelling of transverse myelitis. A couple people wrote it down. Most of my answers are one liners. However, unlike the other responses I like it when told, Well, you look good. I answer with a genuine thank you. I enjoyed compliments when I worked and really, really miss them. .and I really,really don't want to look as bad as I feel, Patti - Michigan On Jul 9, 2013, at 2:54 AM, I.WHIDDETT i.whidd...@sky.com wrote: She's history Janice! To the group - I seem to have a problem with my incoming mail, Janice's being all I've received for 2 days, so apologies to anyone who's not had a reply. Regards Iris Sent from my iPad On 8 Jul 2013, at 22:18, Janice Nichols jannic...@gmail.com wrote: Iris, your ex-friend was a jerk.Just stay with the good ones. Janice -Original Message- From: I.WHIDDETT Sent: Sunday, July 07, 2013 1:22 AM To: Susan Kleinz Cc: nmacleo...@yahoo.co.uk ; tmic-list@eskimo.com Subject: Re: [TMIC] Friends Susan, you can't win. When I was frustrated enough to let my feelings show with a particular friend the patronising response was that people change when they're ill..!!! Iris Sent from my iPad On 6 Jul 2013, at 20:28, Susan Kleinz skle...@cox.net wrote: amen Iris. I do the exact same thing. I also hate being told I look good, when I am in excruciating pain. This ™ has ruined my life, and I'm pissed! On Jul 6, 2013, at 6:06 AM, I.WHIDDETT i.whidd...@sky.com wrote: Nikki, just been reading Dalton's words and I totally agree with his response to how are you. I always say fine. This is partly for the reason he gives but also because I learnt early on that it is impossible for any non- TMer to understand our symptoms - certainly unlike anything they will ever have experienced - and I'm all out of patience in trying to explain. By far the most aggravating question to be asked is Are you better now?! Iris
Re: [TMIC] Baclofin Pump
Rob, I'm sorry you had the headache after your procedure. I remember the four days of migraines I had after my lumbar puncture. I don't get headaches and wonder how people survive who have them regularly. Please keep us posted. I think I would have to pay out of pocket, but not having muscles pulling me in every direction would be great. Patti - Michigan On Jul 11, 2013, at 7:48 PM, Robert Pall robthe...@aol.com wrote: Here is my first journal after having the Baclofin Pump placed in my body. The surgery took place on 6/28 early morningit took about 2 1/2 hours. After waking in recovery I was transferred to the ICU where I spent the next 24 hours and was then released to go home. Almost as soon as I woke from surgery I could feeol like a weight had been taken off my legs. The banding was significantly reduced. That being said after being released from the hospital I began to suffer severe headaches and nausea. The neurosurgeon advised that I lie flat on my back and drink lots of caffeinated beverages in order to replenish my spinal fluid which he felt was leaking at the catheter site. I did this and still the headaches got worse and worse...to the point where I had to be readmitted to the hospital. At the hospital I was told to stay flat 24/7 and was given antibiotics and a low dose of steroids.After 3 days in the hospital I had them release me even though I was still suffering from headaches and fatigue. Today it is almost 12 days since my surgery and I am finally starting to feel better. The headaches are gone and the fatigue is less. Not everyone getting the Baclofin Pump goes through the leakage...they say one in 10I was one of them. I know that so far everything has been negative...yet I am still very happy I had the procedure. My legs feel better than they have in 15 years and they are likely to improve even more as the dosage is increased. The pump does stick out of my left side lateral to my naval and is the size of a powderpuff. It is made of titanium and is only slightly under my skin. The surgery consisted of placing the pump on the left side of my naval and the catheter is inserted through a separate cut near my spine. The catheter is placed in the spinal fluid as near as possible to my lesion. The pain from the surgery is minimal and if it were not for the side effects I encountered would have been a piece of cake.The pump is refilled approx. twice per year by an injection through the skin directly into the pump. The pump is programmed by the neurologist via a handheld computer. It is my hope and expectation that this pump will greatly benefit the quality of my life. I should be able to walk better,faster and with far less fatigue and banding. I have no restrictions on physical activity once the sutures have healed (about 2-3 weeks). I can resume swimming and almost any activity my body allows me to do.I will be able to walk my 70 lb Golden retriever and not have a problem even when he sees a rabbit and starts to pull me. I will have to carry a special medical card when I fly as the pump will set off airport alarms. The only other thing I cannot do is get an MRI. I am not ready to recommend and or endorse the pump for everyone. The people who it will help the most are the ones suffering from spasticity and banding. I will keep everyone up to date on my progressand that being said I would recommend anyone considering this procedure to first go through the hospital trial. At the trial a 3 hour dose of the medicine is injected into your spine (similar to a lumbar puncture). Once the injection is done you should see major changes in the way you feel. That is what happened to me and I felt I would never forgive myself for not trying the procedure. To get more information you should google the pump manufacturer and read all about it. GoogleMetronics. Please let me know if you want me to continue a running commentary I my own personal experience. All the best! Rob in New Jersey
Re: [TMIC] Friends
I agree completely. My family and close friends know that I will never be cured and no longer ask those stupid questions. To people who don't have a clue and ask how I am doing, I always say I am doing the best I can, and that usually shuts them up. On Sat, Jul 6, 2013 at 2:28 PM, Susan Kleinz skle...@cox.net wrote: amen Iris. I do the exact same thing. I also hate being told I look good, when I am in excruciating pain. This ™ has ruined my life, and I'm pissed! On Jul 6, 2013, at 6:06 AM, I.WHIDDETT i.whidd...@sky.com wrote: Nikki, just been reading Dalton's words and I totally agree with his response to how are you. I always say fine. This is partly for the reason he gives but also because I learnt early on that it is impossible for any non- TMer to understand our symptoms - certainly unlike anything they will ever have experienced - and I'm all out of patience in trying to explain. By far the most aggravating question to be asked is Are you better now?! Iris
Re: [TMIC] July Birthdays
I wish all the July babies a very HAPPY BIRTHDAY! On Sun, Jun 30, 2013 at 8:51 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the July kids! Please send any additions or corrections to tmic-list@eskimo.com. 7-5 Sumer (fjs181...@aol.com) 7/5 Richard Ashford el...@att.net 7-14 Julie (chi...@cox.net) 7-24 Kevin Weilacher (hwyfli...@yahoo.com) 7-25 Peggy Wilson (pwi1991...@aol.com) 7-25 (jennapa...@aol.com) 7-27 Linda (lp...@aol.com) 7/30 Dex Packard (d...@centurytel.net)
Re: [TMIC] Baclofin Pump
Rob, I hope the use of the pump is perfect for you and that the correct dosage is found fast. Thanks for the updates. I'm praying that you have complete success with all aspects of the surgery. Patti - Michigan On Jun 19, 2013, at 9:28 PM, Robert Pall robthe...@aol.com wrote: Well I am finally going to do it. I have completed my pre-certification and I am scheduled for surgery a week from tomorrow. I am both stressed and excited. I am excited about the possibility of feeling significantly better after suffering almost 16 years with this awful affliction. I am stressed about having a titanium pump attached to my spinal fluid. I promise the group I will give daily reports after the surgery to let all of you know what benefits I come in to. I hope this lets me walk better,takes away the awful banding and lets me live a more normal life. All the best! Rob in New Jersey
Re: [TMIC] June Birthdays
Happy birthday to al the June babies. On Sat, Jun 1, 2013 at 12:20 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the first-of-summer kids! Hope you have a great day! Please send any additions or corrections to tmic-list@eskimo.com. We also remember those with birthdays from this month who have passed on Tom Carr (6/2) and Dennis Galvin (6/25). 6-1 Akua (a...@artfarm.com) 6-5 Tobe Kanon (spirita...@verizon.net) 6/11 Marabeth (mes...@earthlink.net) 6-11 Sharon Marsden (dorightra...@yahoo.com) 6-17 Cheryl (rn11...@yahoo.com) 6-19 Tom in Delaware (t-...@usa.com) 6-19 Debbie Capen (dnca...@gmail.com dca...@earthlink.net) 6-22 Ann Moran (annmo...@gofree.indigo.ie) 6-22 Gerry (suret...@sympatico.ca) 6-24 Lynne (lynnemye...@yahoo.com) 6-25 Errol White (eamjwh...@bigpond.com ) 6-28 Kim Harrison (kimharrison...@comcast.net) 6-29 Pauline (prha...@aol.com) 6/30 Bobby Jim (elbobber...@earthlink.net)
Re: [TMIC] Re: Transverse Myelitis
Hi Amy, Thanks for sharing your TM story. It's stories like yours that make me furious with how TM so drastically changes lives. I like your last line. You rock! Patti - Michigan On May 23, 2013, at 8:40 PM, amy shultz mic...@hotmail.com wrote: My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an unrelated seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I was not treated with any steroids or any other treatment. After intense therapy and many prayers after about 8 months I got use of my arms. Not 100% but some. My arms came back very slowly. I was in therapy for months and months. I have yet to show any improvement with my legs and am ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder removed in 03. I havent show much improvement after the one year mark. I hold on to hope that one day there will be treatment for us, or others like us. I deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I have been unable to return to school. It seems I am in and out of the hospital so much it makes doing anything nearly impossible. Last year alone I was inpatient 13 times. Not counting ER visits. I am on over 30 medications a day. I get exhausted very easily and nap alot. But I still enjoy having fun and hanging with family and friends and this TM will NEVER stop me from being me. Amy Shultz Columbus Ohio From: heyjude48...@aol.com Date: Fri, 26 Apr 2013 23:09:12 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis 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] whats going on?
Robert I also received your post. On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: I got you here in sunny Long Island Rob! ** ** *BERNARD BUTCHER* *Honeywell Engineering* *516-577-5868* *From:* Robert Pall [mailto:robthe...@aol.com] *Sent:* Thursday, May 16, 2013 12:49 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] whats going on? ** ** I just received an email starting I was dropped from this list due to excessive bounced emails. I have no idea what this is about as I do not send that much in...and to the best of my knowledge I have never had an email bounced. Rob in New Jersey
Re: [TMIC] whats going on?
Bernie I tried to e-mail Robert, but it wouldn't go through. On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: I got you here in sunny Long Island Rob! ** ** *BERNARD BUTCHER* *Honeywell Engineering* *516-577-5868* *From:* Robert Pall [mailto:robthe...@aol.com] *Sent:* Thursday, May 16, 2013 12:49 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] whats going on? ** ** I just received an email starting I was dropped from this list due to excessive bounced emails. I have no idea what this is about as I do not send that much in...and to the best of my knowledge I have never had an email bounced. Rob in New Jersey
Re: [TMIC] CONCUSSION
My hair stylist h vertigo due these crystals getting jarred during a car accident. She also had hers manipulated back into place and has returned twice in four years for the procedure. Patti On May 11, 2013, at 3:00 PM, Janice Nichols jannic...@gmail.com wrote: Sure, it can happen again.But, I am on the alert now. Janice From: Gary Thomas Sent: Saturday, May 11, 2013 8:55 AM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION 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] Re: Our Buddy Lists
Yes, AOL has a buddy list. Two people agree to be buddies so you can live chat back and forth when you are both on line. It was quite the rage when it was first implemented. However, it can be time consuming when you are trying to read and answer emails and are interrupted by someone who wants to live chat. I'm not on AOL now, but had an account at one time, because of the buddy list feature. Patti - Michign On May 8, 2013, at 10:57 PM, Cindy McLeroy cindymcle...@socal.rr.com wrote: I'm confused too. Is a buddy list something that AOL uses? We never had one with the TMIC group. More info please. Thanks, Cindy - Original Message - From: Janice Nichols To: heyjude48...@aol.com ; tmic-list@eskimo.com Sent: Wednesday, May 08, 2013 5:55 PM Subject: Re: [TMIC] Re: Our Buddy Lists I’m confused, I don’t have a buddy list. Janice From: heyjude48...@aol.com Sent: Monday, May 06, 2013 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Our Buddy Lists Hi Everyone! I just want to ask all of you who still keep email addresses if you would please add me to your Buddy Lists. I used to see so many people on my Buddy List, but now it's dwindled to two people. We need to be better hooked up to each other and instead of having to look everyone up in my address book, it would be nice to only have to click on a name to chat or send and IM. I think it would be fun! If you decide to add my name or the name of anyone else, we have to notify the other person, that way we will all be on the same page, so to speak. Let me know how you feel about doing this. I've been thinking about it for a few days and think it's a good idea. Guys included too. Love and hugs, Jude tiad
Re: [TMIC] Fw: Juggler This is hilarious!!!!
Absolutely! This is another of several that you and I share. My husband's coughs or sneezes and even his goose-honking nose-blowing cause the electrical shock pain. I have never told him this. My body also responds with a giant jumping reflex that he has never mentioned. I think my reflex is so close to his noise that he isn't aware of it. Maybe, I do it often enough it's no buggy to him. However, it's so painful to me I always feel he should apologize. I keep TM secrets from my hubby, because he shouldn't have to feel guilty when he coughs or sneezes. Patti - Michigan On May 4, 2013, at 3:56 PM, Dalton Garis malugss...@gmail.com wrote: That was SUPER! By the way, have any of you all—or we all—ever have auditory-induced body nerve pain? Any sharp or unexpected sound just goes through my body like being stung by an electric fence. Any thoughts? Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Janice Nichols jannic...@gmail.com Date: Saturday, 4 January 2013 10:52 AM To: tmic-list@eskimo.com Subject: [TMIC] Fw: Juggler This is hilarious Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 4 May 2013 07:52:31 -0700 (PDT) Guys, I really enjoyed this and hope you will too.A good laugh is always good for us. Janice This is about 10 minutes long, but it is funny If you do nothing else today, watch this video. It is excellent clean comedy. Priceless!!! Juggler is funny, but the best part is watching Tip O’Neil and Ronald Reagan laugh together – also the prank he plays on Jim Baker is good stuff! How politicians acted in classier days! Good clean family fun. CLICK HERE: https://www.youtube.com/embed/n6mbW-jMtrY?rel=0
Re: [TMIC] Fw: Juggler This is hilarious!!!!
Janice, That was great. My husband is a huge Reagan fan and we just watched it together. Patti - Michigan On May 4, 2013, at 10:52 AM, Janice Nichols jannic...@gmail.com wrote: Guys, I really enjoyed this and hope you will too.A good laugh is always good for us. Janice This is about 10 minutes long, but it is funny If you do nothing else today, watch this video. It is excellent clean comedy. Priceless!!! Juggler is funny, but the best part is watching Tip O’Neil and Ronald Reagan laugh together – also the prank he plays on Jim Baker is good stuff! How politicians acted in classier days! Good clean family fun. CLICK HERE: https://www.youtube.com/embed/n6mbW-jMtrY?rel=0
Re: [TMIC] Re: Check spam folders for mail from eskimo.com -TMIC
Jude I check my spam folder everything I go into my e-mail. No e-mails from TMIC goes into my spam folder. I have been getting all the e-mails from TMIC with no problem. Patti - Wisconsin TIAD On Fri, May 3, 2013 at 10:53 AM, heyjude48...@aol.com wrote: ** Hello All, It's me again. I just want to mention again that it's important for everyone to check their spam folders for email from TMIC, because members from the quad list, instead of unsubscribing from the list, told their mail providers that their mail from eskimo.com was spam. So now a lot of our mail is going into our spam folders. That was one of the reasons I wrote last time, but I don't think I made it clear enough. So make sure you check your spam folders for more mail you might be missing out on. And, if you have any ideas about how to change what's happening, let me know, because I'll do whatever I can to help the list. I want to keep on hearing from everyone. Even though it is only about 13 of us that are still mailing to the list. I don't know what to do about getting more people back on the list. And, one more thing...if anyone has an address for Patti Voorheis, will you please send it to me? I really need to contact her, but my mail keeps coming back as not delivered. Thank you very much, Jude H. TIAD
Re: [TMIC] Re: Attention -The TMIC List
Yes I use it On Thu, May 2, 2013 at 3:46 PM, Janice Nichols jan...@centurytel.netwrote: 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] May Birthdays
HAPPY BIRTHDAY TO ALL THE MAY BABIES. On Tue, Apr 30, 2013 at 10:06 PM, Barbara H. barbara...@gmail.com wrote: I apologize for being late with these - my husband had a detached retina yesterday, and we've been spending time at different doctors offices, then he had surgery today. It's been a whirlwind. It didn't even click that this was May 1 til I saw Jude's note. But thankfully we didn't miss anyone since no one's birthday was on the 1st. Happy Birthday to all the May kids! Please send any additions or corrections to tmic-list@eskimo.com. We also remember this month Jim Belz, May 11, who has passed away. 5/5 Linda Garrett (limoga43...@yahoo.com) 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com) 5-11 Lynn (roseofr...@aol.com) 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com) 5/31 Wendy Wood (ww...@optonline.net)
Re: [TMIC] Shingles vaccination
Please don't be a guinea pig for any of our sakes. I'm sure one doctor will say, of course, you should get the shingles shot. Another will say, absolutely not. I always ask my doctors if they and their families have had the vaccines. I spent nine years fearing the flu shot, but had one this year to help protect my family and had no reaction at all. Patti - Michigan On Apr 30, 2013, at 5:35 AM, Dalton Garis malugss...@me.com wrote: It might be that, A better question is whether having TM and taking all these medications actually suppresses or even eliminates the threat from Shingles. Because on this side of the Pond we also are getting bombarded with advertisements advising seniors to get the inoculation. Shingles is another auto-immune disease in the Herpes-Simplex family, is that right? And TM is also an auto-immune disease similar to MS, correct? Then, accordingly, perhaps getting the Shingles vaccine might even suppress some TM symptoms, rather than risking an aggravation of symptoms. That would depend, of course, on how the vaccine actually worked to achieve the desired result. I will use myself as a test, if you all would like, and see what happens, if you can wait a month or so for any possible developments. I am retired and spend my days writing and some lecturing and have only domestic-type chores, so the risk of a life-degrading event, even were a flair-up to occur, is rather limited. Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: I.WHIDDETT i.whidd...@sky.com Date: Tuesday, 30 January 2013 2:52 AM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: [TMIC] Shingles vaccination Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 29 Apr 2013 23:52:16 -0700 (PDT) From September this year, UK over 70s are to be offered shingles vaccination. Does anyone have an opinion as to safety or otherwise, please? Past experience tells me my neurologist will give his usual helpful 'your choice' advice! Iris Sent from my iPad
Re: [TMIC] Re: Transverse Myelitis
I have idiopathic TM. No known cause except that I did have singles ober 20 yrs ago, and I also had chicken pox as a child.TM came over a 2 day period - on saturday I noticed my balance wasn't right, and later in the day I felt I had an UTI and went to urgent care and was given drugs. The next morning during my shower I noticed I had trouble lifting my right leg over the tub. After the shower while trying to put on my underwear, I wet my pants twice. Then all of a sudden my legs went out and down on the floor I went. I was rushed to the ER, and after about 8 hrs and a spinal tap and MRI was diagnosed with TM. Spent 4 weeks in rehab and finally was able to walk with a walker, then a cane. I still have bladder/bowel problems like most of us. The only drugs I am on are oxyticbutin for my bladder and a low dose of a sulfer drug 50 mg at night. I don't have the severe pain like so many of us; just burning/freezing and bee stings in my feet. It will be 5 yrs for me in June. I hope this is what you need. On Fri, Apr 26, 2013 at 10:09 PM, heyjude48...@aol.com wrote: ** 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] Hello
Anne and Roger, I am perplexed by both of your posts because of how long you have had TM and that you have had further attacks after so many years. Anne, you said you are now confined to a bed or wheelchair, but didn't say if it was the result of a new TM attack. Did you have a second attack many years after the first? I also wonder if either of you have a clue as to what triggered your attacks. My TM was idiopathic and I truly believed after nine years of no new symptoms (I have plenty old symptoms) that I wasn't going to have a second attack. Just one more reason to hope they find a cure. Patti - Michigan On Apr 3, 2013, at 9:10 PM, Roger Terese Pratt r.c.pr...@frontier.com wrote: Anne, I have had TM for over 19 years, with a secondary attack in 2010 that resulted in peripheral nerve damage. I am on Lyrica, Cymbalta, Zanaflex, and Tylenol PM for the TM stuff, other meds for high cholesterol and acid reflux. While the meds help some, I find that I just need to stay as positive as possible and grin and bear it. Adverse reactions to meds and allergies are the pits, but I say that is just because I am such a complex person. I hope you find some meds that help. Roger in Kennewick, WA From: Pat Voorheis pjv1...@chartermi.net To: Janice Nichols jan...@centurytel.net Cc: dee jay dj88up...@yahoo.com; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Wednesday, April 3, 2013 5:34 PM Subject: Re: [TMIC] Hello Hi Anne, I'm sorry to learn that you are experiencing difficulties after so many years away from TM's clutches. I take 10mg Baclofen every eight hours that almost stops the banding. The banding is around my mid-section - like a corset. I also take Lyrica which has some muscle relaxing effects, but I really give credit to the Baclofen. I hope you can find a muscle relaxer that works for you. Also, Baclofen is inexpensive and Lyrica expensive if you do not have full drug insurance coverage. TM since 2003, age 53, lesion level was C4-C6. Patti -Michigan On Apr 1, 2013, at 12:10 PM, Janice Nichols jan...@centurytel.net wrote: Anne, Glad you found our group.It would help if we knew what meds you were on. Many of us are on different meds for the same problems. Also, there are some meds that almost all of us take. Some have more painful banding than others too.I do not have “painful” banding, just a pressure feeling. But I am sure you will hear from others that have more of a problem with it. Come on TM’ers.Anne needs help from all of you. Janice From: dee jay Sent: Sunday, March 31, 2013 9:05 PM To: tmic-list@eskimo.com Subject: [TMIC] Hello Hello everyone. My name is Anne and I have just joined your group. I was diagnosed with TM in 1975, completely recovered, and then 23 years later here I am confined to a wheelchair/hospital bed and will be for the rest of my life. I hae just started experiencing this banding and have so many allergies to medications even the doctor does not know what to do. Any help would be appreciated.
Re: [TMIC] Hello
Hi Anne, I'm sorry to learn that you are experiencing difficulties after so many years away from TM's clutches. I take 10mg Baclofen every eight hours that almost stops the banding. The banding is around my mid-section - like a corset. I also take Lyrica which has some muscle relaxing effects, but I really give credit to the Baclofen. I hope you can find a muscle relaxer that works for you. Also, Baclofen is inexpensive and Lyrica expensive if you do not have full drug insurance coverage. TM since 2003, age 53, lesion level was C4-C6. Patti -Michigan On Apr 1, 2013, at 12:10 PM, Janice Nichols jan...@centurytel.net wrote: Anne, Glad you found our group.It would help if we knew what meds you were on. Many of us are on different meds for the same problems. Also, there are some meds that almost all of us take. Some have more painful banding than others too.I do not have “painful” banding, just a pressure feeling. But I am sure you will hear from others that have more of a problem with it. Come on TM’ers.Anne needs help from all of you. Janice From: dee jay Sent: Sunday, March 31, 2013 9:05 PM To: tmic-list@eskimo.com Subject: [TMIC] Hello Hello everyone. My name is Anne and I have just joined your group. I was diagnosed with TM in 1975, completely recovered, and then 23 years later here I am confined to a wheelchair/hospital bed and will be for the rest of my life. I hae just started experiencing this banding and have so many allergies to medications even the doctor does not know what to do. Any help would be appreciated.
Re: [TMIC] April Birthdays
HAPPY BIRTHDAY TO ALL THE BIRTHDAY BABIES! On Mon, Apr 1, 2013 at 9:51 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in April! Please send any additions or corrections to tmic-list@eskimo.com. We also remember three who had birthdays this month who have passed on: Ken (kenoliver...@hotmail.com) was on April 1, Jeron Rampersad ( rumc...@hotmail.com) on April 3, and Doc (doc...@insightbb.com) on April 24. 4/10 Marie Dipietro deer...@aol.com 4/18 Bernard Butcher (bernie.butc...@honeywell.com) 4/20 Dianna (carg...@cs.com) 04/20 Todd Tarno (toddtm2...@sbcglobal.net) 4/21 Robert Diehl (sawmil...@verizon.net) 4-25 Shelia (sc...@aol.com) 4-29 Dalton H. Garis (malugss...@gmail.com)
Re: [TMIC] Hello
Welcome Dee Jay. I am sorry to hear about your being hit again with another attack. I pray that improvement will come to you soon. Patti in Wiscconsin On Sun, Mar 31, 2013 at 9:05 PM, dee jay dj88up...@yahoo.com wrote: Hello everyone. My name is Anne and I have just joined your group. I was diagnosed with TM in 1975, completely recovered, and then 23 years later here I am confined to a wheelchair/hospital bed and will be for the rest of my life. I hae just started experiencing this banding and have so many allergies to medications even the doctor does not know what to do. Any help would be appreciated.
Re: [TMIC] March Birthdays
HAPPY BIRTHDAY TO ALL THE MARCH BABIES. I HOPE YOU ALL HAVE A GREAT DAY! On Sat, Mar 2, 2013 at 11:18 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the March kids! Please send any additions or corrections to tmic-list@eskimo.com. And please join me in remembering Mike Hammond, whose birthday was 3/8, who passed away a few years ago. 3-3 Marsha Scholes (marshab...@comcast.net) 03.05 Bettie Imus (bettie5...@aol.com) 3-7 Sue Mattis (bobsue6...@adelphia.net) 3-15 Sandra Melville (luth...@comcast.net) 3-17 Joy S. (joyst...@aol.com) 3-19 Betty Clark (beecl...@aol.com) 3/24 john h (JOHNLOVESKARAOKE) 3/26 Jane Elrod (celr...@aol.com) 3/30 Gary (gbthomas8...@sbcglobal.net) 3-31 Jan H (jmh1...@sbcglobal.net)
Re: [TMIC] Re: Lyrica, Psychiatric Evaluations
I have been taking Lyrica for about four years for the burning/freezing pain, pins needles and ice-pick stabbing pain. It takes the pin, needles, and stabbing away and makes the burning tolerable, but doesn't remove it. I take it every eight hours and know if I forgot it for some stupid reason. I had been taken gabapentin, but it took too long to work and stopped before my next dose. I was miserable most of the time. I would panic if Lyrica wasn't available. Doctors are being scrutinized for the number of scrips they write for oxy meds. Many of them are cutting back. They now have to record prescriptions in our computerized health records so they are concerned for their license. Patti V - Michigan On Feb 15, 2013, at 10:20 PM, heyjude48...@aol.com wrote: Hello Everyone, As you know I am having the Medtronic pain pump put in. I went for my first consultation yesterday. Before they put in the pump I have to have a psychiatric consultation to see if I'm going to be a good candidate. I'm sure it's been a long time, but has anyone had a psychiatric consultation before. I need to know what to expect. I don't know why but I'm kind of nervous about it. I have my heart set on having this surgery because if I don't then I will have to have my leg amputated. There are no other Dr.s who want to continue with oral medication. I also have to go on Lyrica instead of Oxycodone. Has anyone taken Lyrica for pain, not depression? I appreciate your answers and look forward to reading them, Thanks, I love you, Jude, Michigan
Re: [TMIC] 2 year anniversary
Nikki It does get easier. The first two years can be the hardest, because you are still learning about TM and waiting to see how much recovery you will have. The more you learn, the more you will feel in control. The more you reach out to others you learn you're not alone in overcoming what TM did to your body. It's good to find something to do or think about to get your mind off TM for even minutes a day or better yet minutes per hour. I don't remember your limitations so I won't be foolish and tell you something ridiculous. Tmic was my favorite pastime and a great discovery for me. Add something new each week and if you don't enjoy it move on to something else. Keep busy! Patti V -Michigan On Feb 14, 2013, at 6:31 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: This time 2 years ago TM struck overnight whilst I was sleeping, feeling very emotional and tearful and cannot sleep as I think I'm scared I know it sounds silly. Does it get easier? X Sent from my iPad
Re: [TMIC] Unidentified subject!
Hello to you. I hope you are having a great day. Patti On Sun, Feb 10, 2013 at 10:23 AM, Anne Shreve sthrnbll...@yahoo.com wrote: Hello! http://twistoys.com/thy/6vphpoeu65?gwk0
Re: [TMIC]
I found it on the internet. It looks as though is comes as a jam as you spread it on your toast. The cost was around $26.00 and one jar is supposed to last a month. Patti - Wisconsin On Sun, Feb 3, 2013 at 10:33 AM, fatimah shehadeh fatimah.sheha...@gmail.com wrote: Janice, you can order it online at: http://fruiteze.com Fatimah On Sun, Feb 3, 2013 at 12:34 AM, Gary Thomas gbthomas8...@sbcglobal.netwrote: ** Janice, What is it and where is it found (store section)? Gary - Original Message - *From:* Janice Nichols jan...@centurytel.net *To:* tmic tmic-list@eskimo.com *Sent:* Sunday, February 03, 2013 12:25 AM *Subject:* [TMIC] For those of you who have a constipation problem, I read tonite on FB that “Fruiteze” is supposed to be really good. Just thought I would throw that out there. Janice
Re: [TMIC] February birthdays
HAPPY BIRTHDAY TO ALL YOU FEBRUARY BABIES. HAVE A GREAT ONE. PATTI IN WISCONSIN On Fri, Feb 1, 2013 at 12:49 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in February! Please send any additions or corrections to tmic-list@eskimo.com. 2-1 Jeanne Rushton (jrush...@columbiaenergyllc.com) 2/2 Ursula (uma...@t-online.de) 2/2 Lisa in TN (lsim...@aol.com) 2-5 Tita in Delaware (t-...@usa.com) 2-6 Barbara Alma (balmat...@aol.com) 2-7 Barbara in Texas (babbsie1...@yahoo.com) 2/11 Mary (mster...@yahoo.com ) 2-11 Deb Casey (casey...@myway.com) 2/15 Jill (jillybean60...@yahoo.com) 2-17 Joan Fink (2-17 mafi...@yahoo.com) 2/26 Patti - Michigan (pjv1...@chartermi.net) 2/27 Cindy (rdavi...@san.rr.com)
[TMIC] Traveling with TM
My husband and I have taken several trips since TM hit me nine years ago. Traveling started after I read a proverb. Hope deferred makes the heart sick. I wrote in the margin of my Bible, It's time to say yes to Jim's Pacific Ocean Highway 101 trip. The whole idea petrified me and the biggest what if was - what if TM hits again while I'm away from home. You could list your greatest ten fears and figure I had many of them too. We made as many adjustments as we could and flew from Michigan to Seattle, Washington, with small, small suitcases for a two week vacation. We drove from Seattle to San Diego, California. Then flew back home. I didn't have a TM relapse. I didn't loose my meds. I didn't die from riding so long. We have great memories of that trip. Another summer we took our boat on a week's vacation. I didn't fall overboard, but We had to take my brother so he could take over my usual duties. Darn TM. We had to admit that TM changed me and our finances too much to be able to maintain our boat so we sold it (at a loss). Darn TM. We waited a year and bought a used motor home and set out on a three week cross country trip to the Grand Canyon and Yellowstone National Park. I didn't fall off a cliff or get eaten by a grizzly We've taken other trips since and each one has built confidence. Yes they were tiring. Yes I was in pain. I wished to be in my own bed, didn't want to ride one more mile, or walk one more step. However, until writing this that's not what I remembered about those trips. They were good times, with good memories and lots of pictures to prove it. A lot of TMers have traveled and helped me prepare. I'm glad we did it! Patti - Michigan
Re: [TMIC] Traveling with TM
I haven't been to Nashville. I think the climate will be perfect in March. Anything you do to Kick TM behind you brings confidence. Patti On Jan 28, 2013, at 9:24 AM, Janice Nichols jan...@centurytel.net wrote: I am getting braver too - going to Nashville this March for 10 days. Still with some reservations, really looking forward to it. Janice -Original Message- From: Pat Voorheis Sent: Monday, January 28, 2013 7:53 AM To: tmic Subject: [TMIC] Traveling with TM My husband and I have taken several trips since TM hit me nine years ago. Traveling started after I read a proverb. Hope deferred makes the heart sick. I wrote in the margin of my Bible, It's time to say yes to Jim's Pacific Ocean Highway 101 trip. The whole idea petrified me and the biggest what if was - what if TM hits again while I'm away from home. You could list your greatest ten fears and figure I had many of them too. We made as many adjustments as we could and flew from Michigan to Seattle, Washington, with small, small suitcases for a two week vacation. We drove from Seattle to San Diego, California. Then flew back home. I didn't have a TM relapse. I didn't loose my meds. I didn't die from riding so long. We have great memories of that trip. Another summer we took our boat on a week's vacation. I didn't fall overboard, but We had to take my brother so he could take over my usual duties. Darn TM. We had to admit that TM changed me and our finances too much to be able to maintain our boat so we sold it (at a loss). Darn TM. We waited a year and bought a used motor home and set out on a three week cross country trip to the Grand Canyon and Yellowstone National Park. I didn't fall off a cliff or get eaten by a grizzly We've taken other trips since and each one has built confidence. Yes they were tiring. Yes I was in pain. I wished to be in my own bed, didn't want to ride one more mile, or walk one more step. However, until writing this that's not what I remembered about those trips. They were good times, with good memories and lots of pictures to prove it. A lot of TMers have traveled and helped me prepare. I'm glad we did it! Patti - Michigan
Re: [TMIC] Our Memories
Janice I agree with you. I wil try the gamehouse web site. For years I have played game at www.pogo.com but it is always good to try new things. I will give it a try. Patti - Wisconsin On Sat, Jan 26, 2013 at 10:41 PM, Janice Nichols jan...@centurytel.netwrote: Thanks.I will definitely try it! Janice *From:* Betty Clark xbeecla...@gmail.com *Sent:* Saturday, January 26, 2013 6:35 PM *To:* Janice Nichols jan...@centurytel.net *Cc:* heyjude48...@aol.com ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Our Memories If you've never seen them before, there are many on-line games on gamehouse.com that can help with memory... my personal favorite is Super TextTwist. It is a really good game you can play by yourself. You're given six random letters and have to make as many 3-6 letter words as you can in a given amount of time. They show you how many words of each number of letters can be made and as long as you get at least one of the 6-letter words, even if you don't get the rest, you pass on to the next series of letters. As the clock runs out, it shows you the words you missed, so it helps you learn words (and spelling). It's keeps a running score until you fail to get a 6-letter word, so you play against yourself to see how high a score you can achieve. Here's the link to Super TextTwist: http://www.gamehouse.com/online-games/super-texttwist-online Betty On 1/26/2013 3:18 PM, Janice Nichols wrote: I do have memory problems. Not just forgetting names of things, but situations that happened a week ago, or the day after I see a movie, I forget what it was.Eventually I think of it, but it is scary for my husband to be talking about an incident, and I don’t remember it. We have a card game we play with another couple that is called Quiddler. You start with 3 cards and work up to having 10 cards dealt to you. You make words out of your cards dealt to you or discarded by others. It does make you think and it is very addicting. We love it. Janice *From:* heyjude48...@aol.com *Sent:* Friday, January 25, 2013 9:55 PM *To:* tmic-list@eskimo.com *Cc:* heyjude48...@aol.com *Subject:* [TMIC] Our Memories *How is your memory these days? Have you experienced memory loss? If so, how does it affect your life? Does your faulty memory affect your life with your loved ones? * ** *Memory loss has to do with the myelin sheath. The myelin sheath coats the neurons in the spinal column to cement memories. TM destroys the myelin sheath, so that our memories become clouded or we have no memories at all.* *The more we repeat things we need to remember, the thicker the layer of myelin forms around the neurons. Brain games such as Scrabble, Seduki, Boggle, Crossword Puzzles,and other games help us to reform the myelin sheath...* *Any thoughts on this?* *Many hugs,* *Jude*
Re: [TMIC] Re: Subscribe
I have the burning and/or freezing problem so sometimes I play mind games. When my feet burn so bad I want to cry, die, say good-bye to them, I try to convince myself they're freezing . When they are freezing, I ask myself if they are really burning. Either way they hurt, but it gives me a feeling of being in control. Patti - Michigan On Jan 24, 2013, at 10:14 PM, Kim Harrison kimharrison7...@att.net wrote: My wish is for someday to be able to wear sock or shoes.. and winter is a pain barefoot, but the pain of anything touching my feet is unbearable.. From: heyjude48...@aol.com heyjude48...@aol.com To: jan...@centurytel.net Cc: tmic-list@eskimo.com Sent: Thu, January 24, 2013 9:08:56 PM Subject: Re: [TMIC] Re: Subscribe I am wearing socks and leg warmers right now along with my TED boots that hold my feet up in bed. Plus, I have a sheet and two blankets on, and a quilt when I go to bed. Jude Michigan In a message dated 1/24/2013 4:46:29 P.M. Eastern Standard Time, jan...@centurytel.net writes: My feet are cold most of the time. I am assuming that is natural for TM - anyone else? Janice From: Kim Harrison Sent: Wednesday, January 23, 2013 6:29 PM To: heyjude48...@aol.com ; jcs...@yahoo.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe Thank you Jude.. our Cheerleader !! How is the cold effecting ya'all.. I HATE it... everything stings and hurts more and worse is I can not wear sholes for socks so TM legs stick and feet are freezing... anyone else? From: heyjude48...@aol.com heyjude48...@aol.com To: jcs...@yahoo.com Cc: tmic-list@eskimo.com Sent: Wed, January 23, 2013 7:24:07 PM Subject: Re: [TMIC] Re: Subscribe I'm happy that you guys are glad to see us active again. I am working my = off to keep us up and running. Neither Jim Lubin or Sam Siegel are interested in doing anything with us anymore so it is just me trying like hell to keep things interesting. However, I am running out of ideas to talk about and need your help. I just got an email today from a lady who is interested in joining us, so I sent her the info. Help! Jude In a message dated 1/23/2013 5:51:24 P.M. Eastern Standard Time, jcs...@yahoo.com writes: 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 ...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 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 EnglandTel: 01268 771642 Regards Iris UK
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 robthe...@aol.com *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 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 EnglandTel: 01268 771642 Regards Iris UK
Re: [TMIC] Re: Broken Bones
I am responding to Janice's question about cold feet. Yes since TM my feet feel as though they are encased in ice. Sometime the cold goes up my leg to my knees. They feel so cold they burn. Patti in Wisconsin On Fri, Jan 25, 2013 at 10:59 AM, heyjude48...@aol.com wrote: ** *Wow, that's a lot of breaks. Do you also have brittle bone disease like I do? What did you do for the 5 months with a walking boot on it. I have one for my broken leg, but it leaves me with sores on my leg where it rubs on it.* ** *Hugs,* *Jude* In a message dated 1/25/2013 12:55:50 A.M. Eastern Standard Time, kimharrison7...@att.net writes: I fell last year and broke my leg, ankle, heel and foot. because I can't take anything on my feet lucky for me orthor knew about TM and in place of surgery he put a walking boot on it) funny still could not walk LOL had to wear it for 5 months but when the TM burning started up I could take it off for a little while -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* kimharrison7...@att.net *Cc:* tmic-list@eskimo.com *Sent:* Thu, January 24, 2013 10:19:14 PM *Subject:* Re: [TMIC] Re: Subscribe *Kim,* *I feel so bad for you that you can't wear socks or anything on your feet. Mine tingle and the toes are broken on my right foot so they hurt, but I can still keep my feet warm with socks and leg warmers.* ** *Jude,* *Michigan.* In a message dated 1/24/2013 10:14:48 P.M. Eastern Standard Time, kimharrison7...@att.net writes: My *wish* is for someday to be able to wear sock or shoes.. and winter is a pain barefoot, but the pain of anything touching my feet is unbearable.. -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* jan...@centurytel.net *Cc:* tmic-list@eskimo.com *Sent:* Thu, January 24, 2013 9:08:56 PM *Subject:* Re: [TMIC] Re: Subscribe *I am wearing socks and leg warmers right now along with my TED boots that hold my feet up in bed. Plus, I have a sheet and two blankets on, and a quilt when I go to bed.* ** *Jude* *Michigan* In a message dated 1/24/2013 4:46:29 P.M. Eastern Standard Time, jan...@centurytel.net writes: My feet are cold most of the time. I am assuming that is natural for TM - anyone else? Janice *From:* Kim Harrison kimharrison7...@att.net *Sent:* Wednesday, January 23, 2013 6:29 PM *To:* heyjude48...@aol.com ; jcs...@yahoo.com *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Subscribe Thank you Jude.. our Cheerleader !! How is the cold effecting ya'all.. I HATE it... everything stings and hurts more and worse is I can not wear sholes for socks so TM legs stick and feet are freezing... anyone else? -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* jcs...@yahoo.com *Cc:* tmic-list@eskimo.com *Sent:* Wed, January 23, 2013 7:24:07 PM *Subject:* Re: [TMIC] Re: Subscribe *I'm happy that you guys are glad to see us active again. I am working my = off to keep us up and running. Neither Jim Lubin or Sam Siegel are interested in doing anything with us anymore so it is just me trying like hell to keep things interesting. However, I am running out of ideas to talk about and need your help. I just got an email today from a lady who is interested in joining us, so I sent her the info. Help!* ** *Jude* In a message dated 1/23/2013 5:51:24 P.M. Eastern Standard Time, jcs...@yahoo.com writes: 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 ...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 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
Re: [TMIC] Facebook
Ahhh Dalton, now I feel young as I like FB. Although, it's the pictures of my grandchildren and all the positive comments that I like the most! Not too old for FB. Patti -Michigan On Jan 23, 2013, at 11:09 AM, Dalton Garis malugss...@me.com wrote: For my situation, I don't need Facebook; But i see that for the young they really like to send pictures to each other. WE, on the other hand, grew up READING things rather than VIEWING things, and that is the difference. We read and the younger set views. It is WORDS ON A PAGE for us, but for the younger set they IMAGE more. dg Dalton Garis Flushing, Queens New York, USA (718) 838-0437
Re: [TMIC] Facebook
It could be the medications. I blamed mine on the steroids. I thought they fried my brain. Although I was an avid reader before TM, it was four months before I could pick up a book. Like Cindy I had to reread over and over to comprehend the story. Reading TM Forum, writing to tmic, working puzzles and reading my Bible have brought me a long way. However, I'm slow and I blame it on meds. Patti V. - Michigan. (Br) On Jan 24, 2013, at 4:30 PM, Tracey L. Black tracey.bl...@hnoins.com wrote: I wonder if it has anything to do with the type of meds that are being taken? Ashlee is a straight A student and has been since before TM. She only takes Oxybutnin XL 15 mg once a day. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency PO Box 3039, 132 Buford Avenue Gettysburg, PA 17325 Phone: 717-334-6741, x 29 Fax: 717-334-3414 Office hours: 8:00 a.m. - 5:00 p.m. My hours: 9:00 a.m. - 5:00 p.m. image005.jpg image006.jpg P Please consider the environment before printing Insurance coverage cannot be bound or altered without confirmation from a licensed agent. If you do not hear from us within 1 business day, please re-contact us in case your information has not be retained. This message contains confidential information for use only by its intended recipients and may contain information that is proprietary, privileged, and protected under the law (including Gramm-Leach-Bliley and HIPAA/HITECH). If you are not the named addressee, you are hereby notified that any use of, distribution of, copying, or reliance upon the contents of this e-mail is strictly prohibited and may result in criminal or civil penalties. Please notify the sender immediately by e-mail if you have received this by mistake and delete this e-mail from your system. Thank you. From: Dalton Garis [mailto:malugss...@me.com] Sent: Thursday, January 24, 2013 4:27 PM To: Cindy McLeroy Cc: heyjude48...@aol.com; patticoole...@gmail.com; malugss...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook I do. My mind immediately wanders with all the images suggested by the words. Always have been this way. Can't concentrate on anything. Amazing that I was able to get past high school! Dg Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On 24 Jan 2013, at 4:20 PM, Cindy McLeroy cindymcle...@socal.rr.com wrote: I love to read but for the last 10 years or so I have extreme difficulty concentrating on reading a book. It seems I have to read 10 pages, go back 5, read 10 more, go back 5. Think every book I get through I must have read it at least twice. Do others have this problem? Cindy - Original Message - From: heyjude48...@aol.com To: patticoole...@gmail.com ; malugss...@gmail.com Cc: tmic-list@eskimo.com Sent: Wednesday, January 23, 2013 10:17 AM Subject: Re: [TMIC] Facebook I disagree, unless at 61 I am one of the younger ones. I enjoy the words and the pictures. I collect a lot of the (to me) inspirational photos. I get a lot out of them, maybe because I haven't been reading as much as I used to. I have to get back to my books. Jude In a message dated 1/23/2013 11:39:25 A.M. Eastern Standard Time, patticoole...@gmail.com writes: I AGREE COMPLETELY DALTON. PATTI On Wed, Jan 23, 2013 at 10:09 AM, Dalton Garis malugss...@me.com wrote: For my situation, I don't need Facebook; But i see that for the young they really like to send pictures to each other. WE, on the other hand, grew up READING things rather than VIEWING things, and that is the difference. We read and the younger set views. It is WORDS ON A PAGE for us, but for the younger set they IMAGE more. dg Dalton Garis Flushing, Queens New York, USA (718) 838-0437
Re: [TMIC] Re: Subscribe
Cindy I have often wondered that since I had singles, does that mean I can't get it again? I am afraid to get any shots. I have been advised not to Patti - Wisconsin On Fri, Jan 25, 2013 at 2:51 PM, Cindy McLeroy cindymcle...@socal.rr.comwrote: ** If you had chicken pox as a child you should get the shingles vac. - Original Message - *From:* Pat Cooley patticoole...@gmail.com *To:* heyjude48...@aol.com *Cc:* jan...@centurytel.net ; tmic-list@eskimo.com *Sent:* Friday, January 25, 2013 7:20 AM *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 robthe...@aol.com *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 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 EnglandTel: 01268 771642 Regards Iris UK
Re: [TMIC] request
Welcome back Rick. Patti - Wisconsn On Fri, Jan 25, 2013 at 2:05 PM, Richard Ashford el...@att.net wrote: Rick-back on list *From:* Richard Ashford el...@att.net *To:* tmic-list@eskimo.com tmic-list@eskimo.com *Sent:* Friday, January 25, 2013 1:51 PM *Subject:* [TMIC] request
Re: [TMIC] Fw: What to take to bed with you...Not a Joke!
Janice I read this before somewhere. I can't remember where or when. Thanks for the reminder. Patti - Wisconsin On Fri, Jan 25, 2013 at 7:24 PM, Janice Nichols jan...@centurytel.netwrote: THOUGHT THIS MIGHT BE A GOOD IDEA FOR ALL OF US. JANICE *What to take to bed with you - not a joke.* * * *[image: keys.jpg]* * ** **Put your car keys beside your bed at night.** Tell your spouse, your children, your neighbors, your parents, your Dr's office, the check-out girl at the market, everyone you run across. Put your car keys beside your bed at night. If you hear a noise outside your home or someone trying to get in your house, just press the panic button for your car. The alarm will be set off, and the horn will continue to sound until either you turn it off or the car battery dies. This tip came from a neighborhood watch coordinator. Next time you come home for the night and you start to put your keys away, think of this: It's a security alarm system that you probably already have and requires no installation. Test it. It will go off from most everywhere inside your house and will keep honking until your battery runs down or until you reset it with the button on the key fob chain. It works if you park in your driveway or garage. If your car alarm goes off when someone is trying to break into your house, odds are the burglar/rapist won't stick around. After a few seconds, all the neighbors will be looking out their windows to see who is out there and sure enough the criminal won't want that. And remember to carry your keys while walking to your car in a parking lot. The alarm can work the same way there. This is something that should really be shared with everyone. Maybe it could save a life or a sexual abuse crime. P.S. I am sending this to everyone I know because I think it is fantastic. Would also be useful for any emergency, such as a heart attack, where you can't reach a phone. My Mom has suggested to my Dad that he carry his car keys with him in case he falls outside and she doesn't hear him. He can activate the car alarm and then she'll know there's a problem.* image001.jpg
Re: [TMIC] Re: Need your input
Hey there is no way any of us can or will be bored. We are here for each other. If you want to rant and rave - go ahead. We all have those days - more than we care to admit. If all you want is to know someone is other there to talk to - we are here. Please feel free to say what you want. We have to keep the lines of communication open. Patti in Wisconsin On Thu, Jan 24, 2013 at 3:36 PM, Janice Nichols jan...@centurytel.netwrote: Regina, you would not bore us. Most of us probably would like to talk about the same things anyway. If anyone is bored, they can delete. I am afraid it is this shyness that has been one of the problems with our site.Please feel free - everyone! Janice *From:* heyjude48...@aol.com *Sent:* Wednesday, January 23, 2013 1:28 PM *To:* regina...@sbcglobal.net *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Need your input *So Regina...what are the issues you want to discuss?* ** *Jude* In a message dated 1/23/2013 12:29:34 A.M. Eastern Standard Time, regina...@sbcglobal.net writes: I can think of a lot of issues to talk about. What holds me back is that I don't want to bore anyone. I'm sitting at my computer, a bit dazed because I've taken a small doze of a sleeting pill as I was shall I say the word --- On *Tue, 1/22/13, heyjude48...@aol.com heyjude48...@aol.com* wrote: From: heyjude48...@aol.com heyjude48...@aol.com Subject: Re: [TMIC] Re: Need your input To: jan...@centurytel.net Cc: tmic-list@eskimo.com Date: Tuesday, January 22, 2013, 6:45 PM *We really do have a good group. I'm busting my butt to come up with topics to discuss. Anything that you think of will be appreciated.* ** *Jude* In a message dated 1/22/2013 9:23:26 P.M. Eastern Standard Time, jan...@centurytel.net writes: You know, it sounds like everyone wants to come back to our site here. Let’s get back to sharing and responding again. Also, those questions that pop up over time too. I doubt that anyone can go for long without questions about something! What a great bunch we have! Janice *From:* rn11...@yahoo.comhttp://us.mc1813.mail.yahoo.com/mc/compose?to=rn11...@yahoo.com *Sent:* Monday, January 21, 2013 6:43 PM *To:* tmichttp://us.mc1813.mail.yahoo.com/mc/compose?to=tmic-list@eskimo.com *Subject:* Fw: [TMIC] Re: Need your input I have had a flu shot every year for over 25 years. Also had a pneumonia shot. See my PCP every 3 months; he takes care of my meds. I am having a lot of bone pain from my metastatic breast cancer that I will speak with my oncologist about when I see her in February. Trouble is the treatment also causes bone pain. I hate facebook! Miss the old TMIC group. Cheryl - Forwarded Message - *From:* Robert Pall robthe...@aol.com *To:* heyjude48...@aol.com; snow121...@hotmail.com *Cc:* tmic-list@eskimo.com *Sent:* Monday, January 21, 2013 6:52 PM *Subject:* Re: [TMIC] Re: Need your input I have taken the flu shot for the past 15+ yearsnever got the flu.and I do not believe getting TM had anything to do with any kind of immunizations. I also see my regular MD twice a year minimum and he does prescribe most of my meds. However I see my neurologist at least once per year to insure that I am up to date with the best pain killers and meds available This year he is doing a baclofen injection into my spine to see if a baclofen pump will be beneficial and he also prescribed 2 oz per month of marijuana which I know is beneficial Finally I would love to see this list get busy again.I hate going on facebook! Rob in New Jersey.. -Original Message- From: Heyjude48458 heyjude48...@aol.com To: snow121100 snow121...@hotmail.com Cc: tmic-list tmic-list@eskimo.com Sent: Mon, Jan 21, 2013 3:03 pm Subject: [TMIC] Re: Need your input *Hi Carol,* ** *Thank you for answering me...I'm trying to rev up the TMIC list again. Anything you want to know or questions you need answered please email me. It's important that you write in from time to time.* ** *Love you,* *Jude* *Michigan* ** *Learn from yesterday, Live for today, Hope for tomorrow.* * Albert Einstein* In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time, snow121...@hotmail.comhttp://us.mc1813.mail.yahoo.com/mc/compose?to=snow121...@hotmail.comwrites: Hey Jude! I have received a flu shot every year, except the first year, after the onset of TM. I became sick in June 2005. I have not noticed any complications. I think we all have to figure out the pros and cons. I have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years old). Yes, 6! I had 2 bypasses in 2 of the arteries. I don't know about now, but then I was told it would be better to make 2 shorter graphs than 1 longer one. Anyway, along with my doctors, my daughter an RN and my son-in-law a doctor, I have made the decision to get flu shots
Re: [TMIC] neurologist
Deb you have certainly been through hell. I am almost embarrassed to respond to you as I have complaints like so many of us TMers, but nothing compared to what you have been through. I just wanted to say how wonderful that you have such a caring and responsive doctor. I wish more of us could say that. I am so glad that Jude has given the TMICd a new life. I am on FB, but sure missed this group. Hope to see more posts here in the coming days. Patti in Wisconsin On Thu, Jan 24, 2013 at 5:45 PM, Deb Monteleone aiki...@optonline.netwrote: I see my neurologist every 3 -4 months, as that is a requirement when receiving Tysabri infusions for MS. Blood work is done every 3 months and Brain MRI every 6 months, all these are requirements for Tysabri. It is a monthly infusion that can possibly cause a deadly brain infection, hence all the follow-up. It is the only MS medication that truly works the best and after doing shots every day for a year with Copaxone I take the chance that all the tests would catch the virus before it did damage. ** ** I do have TM for 4.5 years now, they diagnosed it as being caused by MS. My lesion is at T8-10, I believe. Had to learn to stand, walk, so steps again. Ended up with a cane and walking slower and more unsteady than before TM. I would watch how people walked and especially how they went up and down stairs. My symptoms and pain are pretty much the same as most in this group. ** ** It definitely makes a difference who your Neurologist is. Mine diagnosed TM about 5-10 minutes after I first walked through his door. I had 3 days of steroid infusions, starting that day (had them stay late for me), then oral steroids. It was a few weeks after that when I lost control of my leg muscles. This time went into his office in a wheelchair and he put me in hospital for 5 days of intravenous steroids 3x day, then off to Re-hab for few weeks. Finally home, where I never stopped trying to improve and I still concentrate on walking better, etc. If only the pain would stop I could deal with the rest; fatigue, cognitive, unable to do all I did before TM. I am still improving minutely but I can’t stop believing and trying to walk normal again and praying that pain reduction would go along with that. ** ** For me, my Neurologist is like my PCP; I see him, email him when things change and he gives me all my meds (which is a lot). I have constant very painful nerve pain in both legs, feet being the worst. He is a MS specialist and the office is a MS Center. I also get tested for my optical nerve, cognitive abilities and my gait once a year. I feel blessed to have my doctor. He is available by email anytime, including nights, weekends and of course by phone during the day and an emergency number. He listens to my symptoms, adjusts meds when necessary and marks any differences in my sensations and movements. ** ** Seeing my Neurologist on a regular basis also makes me feel secure that someone who is very competent and understanding of my condition is watching over me and knows my history if God forbid something happens again. ** ** Wow, didn’t realize all this would come out. That is what’s great about this group; it’s a safe comfortable place to say what you need to because you all understand. ** ** It’s so nice to have emails from this group again. ** ** Make it a great day, Deb ** ** *From:* Barbara H. [mailto:barbara...@gmail.com] *Sent:* Thursday, January 17, 2013 11:33 AM *To:* Robert Pall *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] neurologist ** ** I think it depends on one's needs. I've had TM for 17 years and haven't seen a neurologist in about 14 years. I got to an acceptable plateau (can walk and pretty well function as a homemaker and volunteer, have some issues with fatigue, balance, and muscle spasms. I don't think I could hold down a job for various reasons, but I've been able to raise my children, keep my home, and help out in various areas at church and my kids' schools). I am not on any TM-related medications, so when we moved to another state, I didn't seek out a new neuro. It helped that my PCP was knowledgeable about TM and willing to refer me to anyone I wanted to see -- it was through him I was referred to a urologist for problems in that realm. If I had problems that only a neuro could help with or was on certain medications that it would be best for him to monitor, I'd see one, and I'd encourage anyone with any of those needs to keep seeing one, but otherwise there is no need to see him every year just to hear that everything is the same, which is about where we were when I last saw him. Of course, if new problems or questions crop up, I wouldn't hesitate to seek one out. Barbara H. http://barbarah.wordpress.com On Thu, Jan 17, 2013 at 11:21 AM, Robert Pall robthe...@aol.com wrote:** ** I
Re: [TMIC] Re: Need your input
Janice I just love to see the posts from here. I am on FB like so many of us. I enjoyed it at first, but there is so much needless posting and takes so long to go everything until you get something about TM that helps. I am a pet lover, but get tired of looking at all the cute animal posts that have nothing to do with TM. I don't believe I will leave FB, but would like to see more posts here from people. I miss the people who didn't go to FB. Patti in Wisconsin On Tue, Jan 22, 2013 at 8:23 PM, Janice Nichols jan...@centurytel.netwrote: You know, it sounds like everyone wants to come back to our site here. Let’s get back to sharing and responding again. Also, those questions that pop up over time too. I doubt that anyone can go for long without questions about something! What a great bunch we have! Janice *From:* rn11...@yahoo.com *Sent:* Monday, January 21, 2013 6:43 PM *To:* tmic tmic-list@eskimo.com *Subject:* Fw: [TMIC] Re: Need your input I have had a flu shot every year for over 25 years. Also had a pneumonia shot. See my PCP every 3 months; he takes care of my meds. I am having a lot of bone pain from my metastatic breast cancer that I will speak with my oncologist about when I see her in February. Trouble is the treatment also causes bone pain. I hate facebook! Miss the old TMIC group. Cheryl - Forwarded Message - *From:* Robert Pall robthe...@aol.com *To:* heyjude48...@aol.com; snow121...@hotmail.com *Cc:* tmic-list@eskimo.com *Sent:* Monday, January 21, 2013 6:52 PM *Subject:* Re: [TMIC] Re: Need your input I have taken the flu shot for the past 15+ yearsnever got the flu.and I do not believe getting TM had anything to do with any kind of immunizations. I also see my regular MD twice a year minimum and he does prescribe most of my meds. However I see my neurologist at least once per year to insure that I am up to date with the best pain killers and meds available This year he is doing a baclofen injection into my spine to see if a baclofen pump will be beneficial and he also prescribed 2 oz per month of marijuana which I know is beneficial Finally I would love to see this list get busy again.I hate going on facebook! Rob in New Jersey . . -Original Message- From: Heyjude48458 heyjude48...@aol.com To: snow121100 snow121...@hotmail.com Cc: tmic-list tmic-list@eskimo.com Sent: Mon, Jan 21, 2013 3:03 pm Subject: [TMIC] Re: Need your input *Hi Carol,* ** *Thank you for answering me...I'm trying to rev up the TMIC list again. Anything you want to know or questions you need answered please email me. It's important that you write in from time to time.* ** *Love you,* *Jude* *Michigan* ** *Learn from yesterday, Live for today, Hope for tomorrow.* * Albert Einstein* In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time, snow121...@hotmail.com writes: Hey Jude! I have received a flu shot every year, except the first year, after the onset of TM. I became sick in June 2005. I have not noticed any complications. I think we all have to figure out the pros and cons. I have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years old). Yes, 6! I had 2 bypasses in 2 of the arteries. I don't know about now, but then I was told it would be better to make 2 shorter graphs than 1 longer one. Anyway, along with my doctors, my daughter an RN and my son-in-law a doctor, I have made the decision to get flu shots annually and pneumonia vaccine every 5-7 years as recommended. When I lived near Chicago, my neurologist was Dr. Joy Derwenskus at Northwestern where she was also an associate professor. Now that I live closer to Indianapolis, I see Dr. Margaret Frazer, in Carmel. She is with JWM Neurology and also works in research. As much as you can enjoy a doctor, I have enjoyed seeing both of them. I see no fault with them just get exasperated with all the unknowns of TM. *Carol * Worrying does not empty tomorrow of its troubles; It empties today of its strengths. -- From: heyjude48...@aol.com Date: Mon, 21 Jan 2013 11:53:38 -0500 Subject: Need your input To: 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 CC: tmic-list@eskimo.com; heyjude48...@aol.com *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
Re: [TMIC] Facebook
I AGREE COMPLETELY DALTON. PATTI On Wed, Jan 23, 2013 at 10:09 AM, Dalton Garis malugss...@me.com wrote: For my situation, I don't need Facebook; But i see that for the young they really like to send pictures to each other. WE, on the other hand, grew up READING things rather than VIEWING things, and that is the difference. We read and the younger set views. It is WORDS ON A PAGE for us, but for the younger set they IMAGE more. dg Dalton Garis Flushing, Queens New York, USA (718) 838-0437
Re: [TMIC] Re: [TM-HA] Where is everyone? There used to be a lot of...
I am still here and have been on TMIC lately. I hope to see more of us in the future. I am on FB but prefer TMIC. Patti in Wisconsiin On Tue, Jan 22, 2013 at 1:42 PM, rn11...@yahoo.com rn11...@yahoo.comwrote: I never left the tmic site but most moved to facebook. I hate facebook and wish everyone would come back. I miss them. Cheryl -- *From:* Judith Gail Hoops notification+zrdooofho...@facebookmail.com *To:* TM-HA tmh...@groups.facebook.com *Sent:* Tuesday, January 22, 2013 2:32 PM *Subject:* [TM-HA] Where is everyone? There used to be a lot of... Judith Gail Hoops posted in TM-HAhttp://www.facebook.com/n/?groups%2FTMHAHA%2Fpermalink%2F444840128915101%2Fmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com [image: Where is everyone? There used to be a lot of...]http://www.facebook.com/n/?profile.phpid=1580533033mid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.comJudith Gail Hoopshttp://www.facebook.com/n/?profile.phpid=1580533033mid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com2:32pm Jan 22 Where is everyone? There used to be a lot of people here every day. Are we so jaded that we have nothing to talk about? Would you mind dropping in at TMIC? We are down to 13 members and need more input on the topics we are talking about. The address is: tmic-list@eskimo.com and to sign up you need to first send an email to tmic-list-requ...@eskimo.com, with the word Subscribe in the space under the address in the topic line. I love you. ♥ View Post on Facebookhttp://www.facebook.com/n/?groups%2FTMHAHA%2Fpermalink%2F444840128915101%2Fmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com· Edit Email Settingshttp://www.facebook.com/n/?settingstab=notificationssection=group_notificationmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com· Reply to this email to add a comment.
Re: [TMIC] Need your input
Jude since everyone with TM 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] Need your input
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] 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] neurologist
Janet I hope you kicked that doctor to the curb. He has no business being a doctor. Patti C. in Wisconsin On Fri, Jan 18, 2013 at 10:03 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 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
[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] need for a neuroloist
The description you gave sounds familiar. I didn't and could not have gone back to my banking job. My biggest anxiety in the early days of TM was my inability to think. It took four months before i could read And longer to comprehend. I got stuck or stumbled on words when trying to talk and literally sounded drunk. Had a hard time between left and right. Couldn't follow directions. Got lost in buildings, because I always turned the wrong way. Did things backwards. I had to have a note for everything. I worked hard to overcome those issues. I sat for hours reading tmic and the TM forum. Typed with two fingers to write my posts, tried for days to make a flow-chart, and even had a nine year old come after school two days a week to play kids games and build items with Legos. I felt like the steroids fried my brain. I'm much, much better and thank God everyday for the improvements. Patti V - Michigan Sent from my iPad On Jan 15, 2013, at 10:44 PM, Dalton Garis malugss...@gmail.com wrote: Cognitive problems, did you say??? Please elaborate. I was a high-flying associate professor economist in an engineering school when getting TM in 2010. Then I began to experience the unthinkable—literally. I could go into class and do the entire lecture from my head. But after TM I would get to a point in the delivery when it was time to pull out some element from my head and, it wouldn't be there! It had always been there, but now I couldn't recall it. It was shocking and humiliating to say the least. It finally did me in. Please tell me about these cognitive problems you mentioned. DG From: pjv1...@chartermi.net Date: Tuesday, 15 January 2013 9:53 PM To: tmic tmic-list@eskimo.com Subject: [TMIC] need for a neuroloist Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800 I had the same neurologist for first five years of TM. I had several MRI's and he was satisfied that I didn't have MS (TM left me with cognitive problems). I had been on the same medications for two years, my primary said he would renew my rx when needed, and I didn't feel the need to contnue seeing my neuro (140 mile round trip). That worked for another two years until my primary moved and his replacement refused to write my rx for the Lyrica and Baclofen. She referred me to her neuro buddy, but I made an appointment with another neuro whom I had heard was the best from one of his MS patients. The new Neuro agreed with my med regime, agreed that there was no need for MRI's, and agreed that I didn't need to see him oftener than annually unless I had neurological changes. The new neuro also understood my frustraton with a primary who would not renew my Lyrica and Baclofen rx. I never went back to that primary and have since seen a Physicians Assistant for my regular illnesses. I didn't think I needed a neurologist. However, I realize that as long as I need Baclofen and Lyrica and it is wise to have one available. Patti V. - Michigan
Re: [TMIC] need for a neuroloist
Pattie V: It has been a little over 2 yrs since I have gone to my neuro. The last time she said I had enough MRI's over the last couple of years, and didn't need anotherl. She also said I didn't need to see her unless there was a change or new symptoms, which there hasn't been. My primary has renewed my Rx. Fortunately I don't need pain meds as yet. I also saw the PA the last time I went a couple of months ago. I like her as much as I do my regular doctor. In many cases the PA is just as knowledgeable. It is obvious that your new primary wanted to send business to her neuro friend. Patti in Wisconsin On Tue, Jan 15, 2013 at 8:53 PM, pjv1...@chartermi.net wrote: I had the same neurologist for first five years of TM. I had several MRI's and he was satisfied that I didn't have MS (TM left me with cognitive problems). I had been on the same medications for two years, my primary said he would renew my rx when needed, and I didn't feel the need to contnue seeing my neuro (140 mile round trip). That worked for another two years until my primary moved and his replacement refused to write my rx for the Lyrica and Baclofen. She referred me to her neuro buddy, but I made an appointment with another neuro whom I had heard was the best from one of his MS patients. The new Neuro agreed with my med regime, agreed that there was no need for MRI's, and agreed that I didn't need to see him oftener than annually unless I had neurological changes. The new neuro also understood my frustraton with a primary who would not renew my Lyrica and Baclofen rx. I never went back to that primary and have since seen a Physicians Assistant for my regular illnesses. I didn't think I needed a neurologist. However, I realize that as long as I need Baclofen and Lyrica and it is wise to have one available. Patti V. - Michigan
Re: [TMIC] need for a neuroloist
I know that Baclofen helps with my banding. I take 10mg 3 x daily. My neuro wrote the rx for 4x in case I want to take an extra one. I also take 100mg Lyrica 3x daily. An RN on this site told me Lyrica also helps with banding so I guess I'm getting double the help. Patti V - Michigan Sent from my iPad On Jan 16, 2013, at 2:03 PM, Susan Kleinz skle...@cox.net wrote: I was diagnosed with TM two years ago. 20 years prior - probable MS I think keeping a neurologist is paramount. New things happen every day! My family doctor, gynecologist, orthopod had never heard (or believe) in TM! So frustrating I have constant banding, and would love to know if anyone has had any luck with anything. (I do have a brace I wear to handle housework (such as vacuuming), and it helps. Susan On Jan 16, 2013, at 11:57 AM, I Whiddett wrote: On the subject of the need for a neurologist, I was discharged by mine after two years on the grounds that there was nothing else to be done to help me. This leaves me in care of my GP practice where there is now no doctor with any knowledge of TM. Their only function for me is to renew my prescription for Amitriptyline, as prescribed by the neurologist 3 1/2 years ago at the onset of TM. I'm really pleased to see the group is still here as I have been wanting to ask if anyone is aware of a drug that helps specifically with banding present 24/7 and intensifying in cold/hot weather. I'm unable to go out in the present cold weather and I don't think Amitriptyline helps at all, not even with sleeping any more. I'd appreciate any advice. Iris On Wednesday, January 16, 2013, wrote: We are talking about the need for a neurologist. I just saw mine yesterday. For my pain he recommended a pain pump. I'm going to have a trial pump put in to see if it will work for me. If it does, they will implant a permanent one in my body, next to the spine with a catheter leading out to my abdomen where the pump can be refilled periodically. The medication last about six months before it must be refilled. I have so much pain because I have a broken leg that is not healing. It's been almost 1 1/2 years. The pain is intense on top of my TM pain. I'm taking strong medication to just get by. Guess I 'talked' your ears off. Will go for now. Judy in Michigan In a message dated 1/16/2013 8:16:47 A.M. Eastern Standard Time, pjv1...@chartermi.net writes: The description you gave sounds familiar. I didn't and could not have gone back to my banking job. My biggest anxiety in the early days of TM was my inability to think. It took four months before i could read And longer to comprehend. I got stuck or stumbled on words when trying to talk and literally sounded drunk. Had a hard time between left and right. Couldn't follow directions. Got lost in buildings, because I always turned the wrong way. Did things backwards. I had to have a note for everything. I worked hard to overcome those issues. I sat for hours reading tmic and the TM forum. Typed with two fingers to write my posts, tried for days to make a flow-chart, and even had a nine year old come after school two days a week to play kids games and build items with Legos. I felt like the steroids fried my brain. I'm much, much better and thank God everyday for the improvements. Patti V - Michigan Sent from my iPad On Jan 15, 2013, at 10:44 PM, Dalton Garis malugss...@gmail.com wrote: Cognitive problems, did you say??? Please elaborate. I was a high-flying associate professor economist in an engineering school when getting TM in 2010. Then I began to experience the unthinkable—literally. I could go into class and do the entire lecture from my head. But after TM I would get to a point in the delivery when it was time to pull out some element from my head and, it wouldn't be there! It had always been there, but now I couldn't recall it. It was shocking and humiliating to say the least. It finally did me in. Please tell me about these cognitive problems you mentioned. DG From: pjv1...@chartermi.net Date: Tuesday, 15 January 2013 9:53 PM To: tmic tmic-list@eskimo.com Subject: [TMIC] need for a neuroloist Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800 I had the same neurologist for first five years of TM. I had several MRI's and he was satisfied that I didn't have MS (TM left me with cognitive problems). I had been on the same medications for two years, my primary said he would renew my rx when needed, and I didn't feel the need to contnue seeing my neuro (140 mile round trip). That worked for another two years until my primary moved and his replacement refused to write my rx for the Lyrica and Baclofen. She referred me to her neuro buddy, but I made an appointment with another neuro whom I had heard was the best from one of his MS patients.
Re: [TMIC] need for a neuroloist
Yes, the torso banding is usually control. Sent from my iPad On Jan 16, 2013, at 9:38 PM, heyjude48...@aol.com wrote: So is your banding gone? In a message dated 1/16/2013 8:41:50 P.M. Eastern Standard Time, pjv1...@chartermi.net writes: I know that Baclofen helps with my banding. I take 10mg 3 x daily. My neuro wrote the rx for 4x in case I want to take an extra one. I also take 100mg Lyrica 3x daily. An RN on this site told me Lyrica also helps with banding so I guess I'm getting double the help. Patti V - Michigan Sent from my iPad On Jan 16, 2013, at 2:03 PM, Susan Kleinz skle...@cox.net wrote: I was diagnosed with TM two years ago. 20 years prior - probable MS I think keeping a neurologist is paramount. New things happen every day! My family doctor, gynecologist, orthopod had never heard (or believe) in TM! So frustrating I have constant banding, and would love to know if anyone has had any luck with anything. (I do have a brace I wear to handle housework (such as vacuuming), and it helps. Susan On Jan 16, 2013, at 11:57 AM, I Whiddett wrote: On the subject of the need for a neurologist, I was discharged by mine after two years on the grounds that there was nothing else to be done to help me. This leaves me in care of my GP practice where there is now no doctor with any knowledge of TM. Their only function for me is to renew my prescription for Amitriptyline, as prescribed by the neurologist 3 1/2 years ago at the onset of TM. I'm really pleased to see the group is still here as I have been wanting to ask if anyone is aware of a drug that helps specifically with banding present 24/7 and intensifying in cold/hot weather. I'm unable to go out in the present cold weather and I don't think Amitriptyline helps at all, not even with sleeping any more. I'd appreciate any advice. Iris On Wednesday, January 16, 2013, wrote: We are talking about the need for a neurologist. I just saw mine yesterday. For my pain he recommended a pain pump. I'm going to have a trial pump put in to see if it will work for me. If it does, they will implant a permanent one in my body, next to the spine with a catheter leading out to my abdomen where the pump can be refilled periodically. The medication last about six months before it must be refilled. I have so much pain because I have a broken leg that is not healing. It's been almost 1 1/2 years. The pain is intense on top of my TM pain. I'm taking strong medication to just get by. Guess I 'talked' your ears off. Will go for now. Judy in Michigan In a message dated 1/16/2013 8:16:47 A.M. Eastern Standard Time, pjv1...@chartermi.net writes: The description you gave sounds familiar. I didn't and could not have gone back to my banking job. My biggest anxiety in the early days of TM was my inability to think. It took four months before i could read And longer to comprehend. I got stuck or stumbled on words when trying to talk and literally sounded drunk. Had a hard time between left and right. Couldn't follow directions. Got lost in buildings, because I always turned the wrong way. Did things backwards. I had to have a note for everything. I worked hard to overcome those issues. I sat for hours reading tmic and the TM forum. Typed with two fingers to write my posts, tried for days to make a flow-chart, and even had a nine year old come after school two days a week to play kids games and build items with Legos. I felt like the steroids fried my brain. I'm much, much better and thank God everyday for the improvements. Patti V - Michigan Sent from my iPad On Jan 15, 2013, at 10:44 PM, Dalton Garis malugss...@gmail.com wrote: Cognitive problems, did you say??? Please elaborate. I was a high-flying associate professor economist in an engineering school when getting TM in 2010. Then I began to experience the unthinkable—literally. I could go into class and do the entire lecture from my head. But after TM I would get to a point in the delivery when it was time to pull out some element from my head and, it wouldn't be there! It had always been there, but now I couldn't recall it. It was shocking and humiliating to say the least. It finally did me in. Please tell me about these cognitive problems you mentioned. DG From: pjv1...@chartermi.net Date: Tuesday, 15 January 2013 9:53 PM To: tmic tmic-list@eskimo.com Subject: [TMIC] need for a neuroloist Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800 I had the same neurologist for first five years of TM. I had several MRI's and he was satisfied that I didn't have MS (TM left me with cognitive problems). I had been on the same medications for two years, my primary said he would renew my rx when needed, and I didn't feel the need to contnue seeing my neuro (140 mile round trip). That worked
Re: [TMIC] flu
I have had TM over 4 yrs. I don't believe mine was caused by the flu shot and I had my last shot in October and didn't get TM until the following June. But, I am just too scared to get another one. Since I am retired I don't have to go out when I don't want to, and my whole family who I have contact with all have had the shot, including my hubby so I think I am safe without it. Patti in Wisconsin On Tue, Jan 15, 2013 at 9:57 AM, anndil...@aol.com wrote: Have had TM for ten years and have had the flu shot each year with no problem. This is the only site that I read.
Re: [TMIC] Face book
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...@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] Face book
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] January birthdays
HAPPY BIRTHDAY TO ALL JANUARY BABIES. On Tue, Jan 1, 2013 at 11:39 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those celebrating in January! And Happy New Year, too! Please send any additions or corrections to tmic-list@eskimo.com. 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1-17 Ginna Hamilton (ginnahamil...@yahoo.com) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday (snow121...@hotmail.com) 1/23 Grace (grace...@gmail.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com)
Re: [TMIC] December birthdays
HAPPY BIRTHDAY TO ALL MY FELLOW DECEMBER BABIES. PATTI IN WISCONSIN On Sat, Dec 1, 2012 at 4:37 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in December. May your days be merry and bright! Please send any additions or corrections to: tmic-list@eskimo.com 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jan...@centurytel.net) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin ((wpcoo...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-15 Alton Ryder(a-ry...@comcast.net) 12/23 Roger Pratt (r.c.pr...@frontier.com) 12-25 Gilly (gillyma...@aapt.net.au) 12/31 Janet (j.d...@shaw.ca)
Re: [TMIC] Looking for input. solving a problem urinating
Janice your experience mirrors mine. I seem to be able to empty my bladder during the day, but at night it seems I can either be soaked in the am, or find I am fairly dry and I never know which one it is going to be. I also wear plenty of protection at night and also get up at least once during the night to go. Patti - Wisconsin On Mon, Nov 12, 2012 at 10:25 PM, Janice Nichols jan...@centurytel.netwrote: Bridget, glad you are doing to see a someone about the bladder retention.I had a urology specialist and it did really help.Still have problems, but can empty my bladder completely on my own.Problems are at night when I make a lot of urine and don’t feel it enough to wake up and go to the bathroom.I seem to go in cycles of heavy flow of urine at night and then a short while of being fairly dry when I wake up in the morning.Go to bed with lots of protection.I know that I will probably not ever be much better with this problem, but at least I do not have to cath any more. Janice *From:* a-ry...@comcast.net *Sent:* Monday, November 12, 2012 2:49 PM *To:* Jde heyjude48...@aol.com *Cc:* tmic tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. solving a problem urinating *Is it just as easy as regular cathing?* Yes, the same. *Do you have to deal with leaking and how do you deal with it?* If you had asked me yesterday I'd have said the only sign of leaking was a wetness at the hole. But yesterday I was rudely reminded of a vulnerability all indwelling caths share: if you pull the cath by accident you injure the bladder, and the bladder reacts with both sphincter and detrusor spasms. And a bit of blood in the bag. The detrusor wins, and a gush of wetness follows. Alton, with a month of unanswered mail - Original Message - From: Jde heyjude48...@aol.com To: a-ry...@comcast.net Sent: Fri, 28 Sep 2012 17:20:46 - (UTC) Subject: Re: [TMIC] Looking for input. solving a problem urinating *Hi Alton,* ** *I don't know if you remember me, but I used to be on TMIC site several years ago and then go tired of all of the arguements and signed off for a while. Anyway, I am back and am interested in suprapubic catheters.* ** *One of my doctors is really pushing me to get it done and Urologist does not want me to. I'm not sure what to do. How are you doing after having gotten it done? Is it just as easy as regular cathing? Do you have to deal with leaking and how do you deal with it?* *Thanks,* *Jude Hoops* ** Practice Random Acts of Kindness -Original Message- From: a-ryder a-ry...@comcast.net To: Bridget Skinner ibridg...@gmail.com Cc: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Sun, Sep 9, 2012 11:12 am Subject: Re: [TMIC] Looking for input. solving a problem urinating Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.) I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusor**muscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed. Pros and cons: Intermittent: pro:you can do it forever con:the bother (compared to the alternatives) of finding a urinal Indwelling: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:years of use can damage the urethra if you are not careful Suprapubic: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:you now have a tube coming out your belly Alton - Original Message - From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Sent: Sat, 08 Sep 2012 22:49:36 - (UTC) Subject: Re:
Re: [TMIC] November birthdays
HAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIES. PATTI - WISCONSIN P.S. I MISS HEARING FROM ALL OF YOU ON TMIC. IT SEEMS NO ONE USES THAT WAY TO COMMUNICATE WITH EACH OTHER. I USUALLY READ EVERYTHING ON THE VARIOUS FB GROUPS, BUT MISS ALL THE REGULARS. On Thu, Nov 1, 2012 at 8:12 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in November! Please send any additions or corrections to tmic-list@eskimo.com. 11-01 Ella (elbanks...@aol.com) 11-2 Jeff (jeffsmokeea...@yahoo.com) 11-03 Gina (gina1103c...@aol.com) 11-6 Margaret Monson (mag...@telus.net) 11-8 Diane (mon...@sympatico.ca) 11-12 Marie (chestnutr...@gtcom.net) 11/13 Kevin (wolft...@optonline.net) 11-17 Becky (opi...@bellsouth.net) 11/20 Cossy (cos...@yahoo.com) 11/22 Judy Hoops (heyjude48...@aol.com) 11-25 Gunny (bgunny7...@aol.com) 11-27 Jack McMillan at rebarj...@aol.com 11-30 Louise Flagg (fla...@webtv.net)
Re: [TMIC] October birthdays
HABBY BIRTTHDAY ALL OCTOBER BABIES. PATTI On Fri, Oct 5, 2012 at 3:58 PM, Barbara H. barbara...@gmail.com wrote: Wow, I'm sorry I am so late with these! It's been busy and time got away from me. But I hope all of you born in October have a wonderful birthday. Please send any additions or corrections to tmic-list@eskimo.com. 10-3 Lauren Graham (grahamsn...@aol.com) 10/4 Neil McNeil (n...@hotmail.com) 10-7 Naomi (ladyno...@aol.com) 10/08 Rudy Aceves (race...@vengrp.com ) 10/9 Assunta Rene (robert...@hotmail.it) 10/11 Lori B. (lbieh...@earthlink.net) 10-11 Kate (nicwi...@cox.net) 10-12 Diana Gray (graymyfat...@aol.com) 10/14 Marieke Dufresne! (marieke...@hotmail.com) 10/14 Lanora (noni...@hotmail.com) 10/16 Sandy Parker (parkersw...@aol.com) 10/16 Linda Cherpeski (cherp...@msn.com) 10-21 Renee A. in CT (littlem...@aol.com) 10-21 Cody Kidwell (c...@austin.rr.com) 10/21 Candy K (cakal...@embarqmail.com) 10-23 Keith (leboo...@cfl.rr.com ) 10-25 Debby Jones (ladybutl...@comcast.net) 10-26 Jim Lubin jlu...@eskimo.com 10-26 Bernie Pelow ((bpe...@austin.rr.com) 10/27 Robin (moldr3...@aol.com) 10/27 Krissy (ladykri...@comcast.net) 10-28 Netta Ganor (net...@isdn.net.il)
Re: [TMIC] September Birthdays
I WISH A HAPPY BIRTHDAY TO ALL YOU SEPTEMBER BIRTHDAY BABIES PLUS A VERY BIG REMEMBRANCE TO PAM. PAM I STILL MISS YOU!!! PATTI IN WISCONSIN Happy Birthday to those born in September! Please send any additions or corrections to tmic-list@eskimo.com/ This month we also remember Pam (montzma...@aol.com), who passed away a few years ago, She was a friend to many. Her birthday was 9/9. 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com ) 09-06 Jake DeGrand (judidegra...@yahoo.com) 9-8 Mary Davidson (keebe...@aol.com) 9/8 Terry Parker (parkersw...@aol.com) 9/12 R. J. Rankin (rj_ran...@yahoo.com) 9-16 Mary Eden Cochran (coch6...@bellsouth.net) 9-17 Bill Wimberly- (bwimbe...@bellsouth.net) 09/20 Rob Pall (robthe...@aol.com) 9-23 Karen (Mushroo) (mush...@juno.com)(mushr...@hotmail.com) 9-24 Suzi in Seattle (ss1...@aol.com) 9/26 Allen Rucker a...@allenrucker.com 9/30 Patti Enstrom (pge...@aol.com )
Re: [TMIC] reply
Mary Anne, please do not leave this site. As we all know, we all experience days when everday things are more than we can tolerate. I know I do, and unfortunatetly we take it out on family. I consider all my TM friends as part of my family. As quickly it happens, it blows over and we are sorry for our outburst. There are many of us that do not have all the pain, etc., that many of us do. Also, there are many of us who have family and friends that help us and make our lives more bearable and are more able to do things for themselves, but there are some of us who are not so lucky. When something like this happens, I chalk it up to a bad day for someone and don't take it personally. Anyway that is my 2 cents worth. Patti On Fri, Aug 10, 2012 at 8:47 PM, Mary Anne Egan mae...@thestettlergroup.com wrote: For whatever reason I could not reply to the series of emails from earlier Nonetheless, I would like to express my confusion.I found this site years ago...for me the intention was the hope of finding an arena for helping me understand TM, navigate our new life with a disability, ideas from other TMers, solutions, tricks, even complain when TM and its secondary issues get to be too muchas the years have passed it seems to be less and less about TM and more and more about criticism...this conversation was about a seemingly innocent post about a TV show, love it hate it, express your opinions, but at some point the conversation stopped being about the show and became a forum for criticising and judging members who commented for liking or hating a show. No agreement to disagree but implied judgement about what kind of person would feel that way a lot of negative hostility...I had no intention of justifying why I liked or disliked a TV show that I felt served a purpose for my personal situation...when I joined this site... I am not asking for any feedback as it seems likely to go in the wrong direction...agree to disagree and leave it therelove the show hate the show who really cares...my life is significantly more complicated than an argument about a stupid tv show and I should never feel the need to justify myself or feel the need to respond to criticsim of my opinion regardless of how I feel...not on this site...and if I am wrong than this is not the site for me I can assure you -- Mary Anne
Re: [TMIC] August Birthdays
HAPPY BIRTHDAY TO ALL YOU AUGUST BABIES. On Tue, Jul 31, 2012 at 11:35 PM, Barbara H. barbara...@gmail.com wrote: August is one of the biggest birthday months for TMers! Happy Birthday to my fellow August birthday celebrants! Please send any additions or corrections to tmic-list@eskimo.com. 8/1 Peachi (pkeene2...@aol.com) 8/1 Cindy McLeroy (cindymcle...@socal.rr.com) 8- 1 Stacy Firth (safi...@dow.com ) 8-3 Larry Throne (lbthr...@hotmail.com ) 8-10 Sean Indiveri (sindiv...@hotmail.com) 8-11 Raylene Gökeri (mrs_gok...@yahoo.com) 8-11 Michelle Maricic (mmari...@aol.com) 8-11 Dalida S. Ortiz de Garcia (py...@yahoo.com) 08/17 Sandra (Harth) Brassil (sbras...@aol.com) 8-17 Kim (jnks...@huntel.net) 8-19 Saroj (sarojkumar...@gmail.com) 8-21 Barbara H. (barbara...@gmail.com) 8-23 Cole (neilandwe...@rogers.com) 8-29 Kathleen (kathleen.kar...@gmail.com) 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
Re: [TMIC] Rick back on list.
I am here too. I know most of us are on facebook, but I miss many who are only on this site. I have not heard from Jude for quite some time even though I do send her messages. I think of her so often and wish we would hear from her or Dave. Patti in Wisconsin On Fri, Jul 13, 2012 at 10:42 AM, Linda Egli le...@sbcglobal.net wrote: I am still here. Not a lot of talk on this site anymore, I think most use Facebook. I am now going on 8 1/2 years with TM I guess I am as good as I'm going to be. My neurologist said last December that he no longer needs to see me unless their is a problem. I am just followed by my PCP, but she is very good. I haven't heard anything from or about Jude in a long time. I haven't heard about anything new to try - wish there was.I developed a bad tremor in my right hand(of course I am right handed) after 3years with TM the numbness in my hands can be really bad, but I manage as best I can. Glad to see some talk on this site. Linda E. From: Richard Ashford el...@att.net To: tmic-list@eskimo.com Sent: Friday, July 13, 2012 1:09 AM Subject: [TMIC] Rick back on list. Hello everyone who might remember me. I hope all of you are as well as tm will let you be. I'm looking forward to hearing from you who want to be in touch with me. I'm also looking forward to hearing if there has been any serious advances in our treatments. Gunny, Grace, Barb, Jude all the old crew I hope especially to hear form you. My condition has not changed, and my insurance and medicaid compleatly realeased me so now I'm having to pay out the nose for personal insurance. Thanks Barack! Well any way my e-mail will be monitored constantly again. I wish all of you the best of everything and hope to talk to you soon. Sincerely Rick Ashford
Re: [TMIC] UNBELIEVEABLE
Cheryl that is so good to hear. That time I am sure pain really felt good. I hope you continue to experience improvements, even after 17 yrs. It gives many us hope that we could possibly see improvement in the years to come. Patti om Wisconsin On Thu, Jul 5, 2012 at 10:31 PM, rn11...@yahoo.com rn11...@yahoo.com wrote: Hello my friends, On 8/13 I will have my 17th anniversary of having tm. I have been numb from T4 to toes since that time, except for a small area on my left thigh. On the 3rd of July,my cat ran toward me to jump into my lap. She missed, and in the process gave me 2 fairly deep scratches in my lower left leg. After being numb for all this time, I felt the pain of the scratches,and I can actually tell what is touching my entire left leg! I am amazed at this. It is something I never expected. I have an ulcer on the bottom of my right heel,and went to a wound clinic; doc ordered VNA for dressing changes. After being evaluated by nurse, she had PT and OT see me.I don't know if this is related or not. I never thought I'd be happy to have pain! I hope you are all doing well. Cheryl
Re: [TMIC] July Birthdays
HAPPY BIRTHDAY TO ALL THE JULY BABIES. HAVE A GREAT DAY PATTI IN WISCONSIN On Thu, Jul 5, 2012 at 5:01 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the July kids! Hope you enjoyed the fireworks! :-) Please send any additions or corrections to tmic-list@eskimo.com. 7-5 Sumer (fjs181...@aol.com) 7/5 Rick in tn (ashfo...@att.net) 7-14 Julie (chi...@cox.net) 7-15 Sandi Siegel (ssie...@myelitis.org) 7-24 Kevin Weilacher (hwyfli...@yahoo.com) 7-25 Peggy Wilson (pwi1991...@aol.com) 7-25 (jennapa...@aol.com) 7-25 Michelle Balliet (chelley...@aol.com) 7-27 Linda (lp...@aol.com) 7/29 Hildred (missprissgran...@aol.com) 7/30 Dex Packard (d...@centurytel.net)
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] June birthdays
HAPPY BIRTHDAY ALL JUNE BABIES!! PATTI IN WISCONSIN On Fri, Jun 1, 2012 at 5:49 AM, rn11...@yahoo.com rn11...@yahoo.com wrote: HAPPY BIRTHDAY TO ALL THOSE BORN IN JUNE Cheryl
Re: [TMIC] Is anyone here?
Rob we are still here. At least I know I am. It seems everyone has gone to the several Face Book groups like Transverse Myelitis Folks. I know all the posts can be a bit much at times.. I am doing the best I can hope you are too. Patti On Thu, May 17, 2012 at 7:33 AM, Robert Pall robthe...@aol.com wrote: Hi...lately the only mail I receive is fromfriends living with TM I just left that facebook room because I was getting far to many chats. Is our network still active or has everyone joined another group. This is where I started and this is where I belong. I would love to hear back from all of the active members and see how they are doing! Rob in New Jersey
Re: [TMIC] May Birthdays
HAPPY BIRTHDAY TO ALL THE MAY BABIES. HOPE YOU ALL HAVE A GREAT DAY. PATTI On Mon, Apr 30, 2012 at 10:37 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in May! Please send any additions or corrections to tmic-list@eskimo.com. 5/5 Linda Garrett (limoga43...@yahoo.com) 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com) 5-11 Lynn (roseofr...@aol.com) 5-12 mother...@msn.com 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com) 5/31 Wendy Wood (ww...@optonline.net)
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] April Birthdays
HAPPY BIRTHDAY TO ALL THE APRIL BABIES. PATTI IN WISCCONSIN On Sat, Mar 31, 2012 at 10:55 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday! May all your April showers bring May flowers! (Please send any additions or corrections to tmic-list@eskimo.com.) 04/03 Jeron Rampersad (rumc...@hotmail.com) 4/10 Marie Dipietro (deer...@aol.com) 4/18 Bernard Butcher (bernie.butc...@honeywell.com) 4/20 Dianna (carg...@cs.com) 04/20 Todd Tarno (toddtm2...@sbcglobal.net) 4/21 Robert Diehl (sawmil...@verizon.net) 4-25 Shelia (sc...@aol.com) 4-29 Dalton H. Garis (malugss...@gmail.com)
Re: [TMIC] Blown Away
I completely agree. Lack of money and the fact that you are dependent on other people is what makes it impossible to make changes in your life. Most of us are in the same boat, we are a prisoner of our limitations. That is why even though it was the hardest thing I have ever done is move 125 miles to be close to our daughter. I did have help from my hubby but the packing, etc. fell on us. We did have help after we got to our destination but just thinking about it now makes me shutter. In many ways our society does not care about our elderly or people with mobility problems. When you have family, you have everything. Patti On Sat, Mar 31, 2012 at 8:41 PM, a...@artfarm.com wrote: 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] Re: tmic-digest Digest V2012 #119
Akua I am so sorry to hear that you have no services in your community to assist you. I live in small town (population just 6,000). We even have a taxi service as there are so many senior citizens living here you aren't able to drive. I am not sure about other services as I am not lucky to need them as I have family here. I will pray that things change for you. Patti in Wisconsin On Thu, Mar 29, 2012 at 11:06 PM, a...@artfarm.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] No mail Date: March 29, 2012 12:28:39 AM EDT To: Janice Nichols jan...@centurytel.net, James Berg molokai...@gmail.com, transverse myelitis tmic-list@eskimo.com Like, for instance, Where Akua lives? D. I'm S glad you're the one who said that Thanks for listening and remembering the many small town horror stories I've shared. There's no infrastructure here, there is no grocery delivery, there is no accommodation. My city rep berated me for expecting the city to pick up recycling weekly for free. I was paying $25 a month for garbage pick up, in addition to paying for other people's children to be educated through my ever increasing property taxes. When i was in the nursing home, my car, in my private driveway was spotted without license plates, which i had friends take off the car to save $, and ticketed. It was visible because i only have a carport, not a garage. So for five years i've had to pay for car i can't drive. I must a maintain the sidewalk that i don't own, the grass that i cannot have a handicapped parking sign in front of, so i can get in and out of my house on those far occasions when i pay $60 to go 1 mile to the doctors!!! This is a small town -- 10,842 people. This the HQ of an old Fortune 500 company the median age is 37.5. I miss bagels and lox, hammantaschen, sfogiatelle, falafels, real sushi, rugelach…. YEs, everyone was friendly when i was able bodied, but there are incursions, and insults and indifference from all and sundry since i've been paralyzed. Win the lottery Dalton -buy a ticket, just one and think of me and when you win, just one of your 392 millions will enable me to walk again and be free.
Re: [TMIC] SPASMS
Janice the one problem I have with my feet is that once in a great while I do get a spasm in the left foot where it hurts like a charlie horse and the foot turns in. It goes all the way up my lef to my thigh. I can turn it back, but it turns again all by itself. I usually do what you do with a charlie horse, I straighten it out real hard. It hurts like hell, but it then goes away. Also I can't wear sandals or sliip on shoes as I can't keep them on my feet Patti On Mon, Mar 5, 2012 at 7:25 PM, Janice Nichols jan...@centurytel.net wrote: Hi Guys, Would like responses on a problem that only recently – after 5 years of TM - has occurred. When put my shoes on, my right foot (heel) spasms and makes it harder to walk. Have any of you had this problem? Really looking forward to summer to wear sandals – don’t think there will be a problem then. Is strange that after all these years that this problem would show up. Thanks, Janice
Re: [TMIC] TM Question
Carol I always say I have TM, and I usually say it is an auto-immune disease even though my TM was said to be idopathic. Patti On Mon, Mar 5, 2012 at 11:39 AM, Carol E snow121...@hotmail.com wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] March birthdays
I ALSO WANT TO SAY HAPPY BIRTHDAY TO ALL THE MARCH BABIES. PATTI On Sat, Mar 3, 2012 at 5:34 AM, rn11...@yahoo.com rn11...@yahoo.com wrote: HAPPY BIRTHDAY TO ALL THOSE BORN IN MARCH! CHERYL
Re: [TMIC] what do i do
Candy all you have to do is create a facebook page. I couldn't do it but my daughter sit it up for me. Once you do that all you have to do is find a facebook member request to be friended, that person can accept you as a friend and then set you up with our several TM sites. We have one just for us gals, then a general one for both men and women. It sure sounds like you have been through h - - l. There are plenty of us who can relate and give you plenty of advice. Good luck Patti in Wisconsin On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes kandyd...@yahoo.com wrote: i apologize again. I know I responded previously (had some family issues)but not sure to whom or when. I'll start over. I was initially diagnosed with neurosarcoidosis (this was tentative), they tried to rule out MS (think they have), back to ground of TM. However, TM should either turn into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more research and found a category of NMO Spectrum disorder. This fits my illness so far. Persons who remain in a TM status but may continue to have relapses etc. I continue to have relapses. Had one in October (Thoracic), increased my steriods back to 40 a day and changed me to CellCept. I have now had new lesions this month (February) in my cervical spine (this is a new area). Really having problems with walking and dragging both feet, my gait if off, memory loss, tightness, light a vice around my torso, back pain, and awful pain at the base of my neck up to my ears. Cannot lay flat on my back of my head. To painful I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone, Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and Lipitor. Vicodin prn. I plan to see my neurologist next week and will insist on plasma Pharisees. Everything I have researched indicates this is the best choice at this point. I had asked for this earlier (wished I had insisted). This would allow my blood to be cleaned as best it could and then allow the cellcept to work on keeping the (This is what I call them) goblins from ganging up on my immune system. Steroids have destroyed my body. I am now steroid dependent. Docs are hoping to get me down to 10 to 15 a day. Have just have cataract surgery on my eyes. Had pelvic fractures, didn't know how I did it (one of the worst pains you can ever have). Due to my first diagnosis (Spine tumor) had damage to my spine which has caused me to have loss of sensation from my waist down. This is a really weird feeling. Have to be extra careful since I do not know when I have cut myself, stepped on anything hot or cold, etc. Thanks for listening. This week was crazy. My mother in law passed away Monday (she was 91 had a great life), became a grandmother for the first time (of course the MOST beautiful baby in the world - think all new granny's say that and then found out about my new lesions). Can't wait until next week (tee hee) PS - I haven't learned how to go to anyone's blog, use twitter or facebook. would like to learn since someone indicated you can reach out and touch more folks that way. Candy From: Janice Nichols jan...@centurytel.net To: Pat Cooley patticoole...@gmail.com; Cansadia Dykes kandyd...@yahoo.com Cc: tmic-list@eskimo.com Sent: Sunday, February 5, 2012 11:05 AM Subject: Re: [TMIC] what do i do Candy, Patti in right. Just tell your story, state any questions you may have (or concerns), and we will try to help you. We have members that have been here from 1 year to 25 years. Many tell of family support, if friend's support, location, vocation if not retired, how much help doctor's have been with medications, etc. Most of us are on similar medications. We call ourselves TM'ers for Transverse Myelitis. At this point, what problems did TM leave you with. Most of us also have problems with our bladders and bowels. You can answer all of these or none of them. It is up to you. You will find that there really isn't much that hasn't been brought up and discussed, after all, we are all fighting the same battle. We are very open with each other. My best to you, Janice, Missouri -Original Message- From: Pat Cooley Sent: Sunday, February 05, 2012 9:16 AM To: Cansadia Dykes Cc: tmic-list@eskimo.com Subject: Re: [TMIC] what do i do Candy welcome to our TM group. I am sorry it had to be under these circumstances. What we usually do is tell your story which we can all relate to. Feel free to ask any questions that you may have and someone will try to answer it. Also, we also have several Facebook sites you can join if you are interested; and are on FB. If so, befriend me and I will add. The FB site is a busy one so you will be able to reach more of us with your questions. If interested, you can find me under Pat Cooley. Patti
Re: [TMIC] ADVISORY: Sen. James to Kick Off Health Awareness Day
Way to go Kim. Good luck keep us informed. Patti On Tue, Feb 14, 2012 at 6:06 PM, kimharrison...@comcast.net wrote: I successfully petitioned the state of Georgia for a Transverse Myelitis day and Senator James is going to the house floor Wednesday morning. I have been asked to speak to members of the state senate and excited to have this opportunity before me Wish me luck, will send pictures when we are done K**im Press conference will start at 9:00 in front of the Capitol. Please be prepared to speak about Transverse Myelitis. You will be addressing legislators, constitituents, other health care provides, etc. We are then scheduled to have picture session with Governor Deal after the press conference. Next we will be recognize Transverse Myelitis in the Senate, and a forum You can bring a camera. We should be done about 2pm ** * * * * *FOR IMMEDIATE RELEASE* *Contact:* Natalie Dale, Director Adam Sweat, Communications Specialist adam.sw...@senate.ga.gov 404.656.0028 * * *Sen. James to Kick Off Health Awareness Day* * * *ATLANTA** (February 14, 2012)* - Sen. Donzella James (D-College Park) will host a press conference* TOMORROW*, February 15, to kick off Health Awareness Day at the State Capitol. She will be joined by various interest groups including health care providers, concerned constituents, and Georgians who have been affected by chronic illnesses such as Transverse Myelitis. *WHO:* Sen. Donzella James (D-College Park) *WHEN:* Wednesday, February 15, 2012 at 9:00 a.m. *WHERE:* Georgia State Capitol Washington Street Steps 206 Washington St. SW Atlanta, GA 30334 # # # *Sen. Donzella James represents the 35th Senate District which includes portions of Douglas and Fulton counties. She may be reached by phone at 404.463.1379 or by email at donzella.ja...@senate.ga.gov.* image001.jpg
