Re: [TMIC] your thoughts?
> Is there anyway that the Fed. government could allow us chronic pain suffers > allowed to by-pass state laws and get "weed" for pain? He is !00% behind medical cannabis already
[TMIC] your thoughts?
Dear fellow TMers, I have been asked by Barack Obama to give input to Tom Daschle concerning Health Care Reform. I in-turn am asking the smartest of my family, friends and acquaintances to give me input. If you have time, please email me your thoughts. There is no rush. I realize that this is a very busy time of the year, so ponder ways to change the current system, or better yet dream of the "perfect" health care. And email me after the holidays. This is not a paid position, so it should not be a top priority, and if you don't have the time, or don't care, that's ok too. I find myself in this position due to donating to the Obama campaign, then answering a boiler plate email asking for suggestions. take care, Frank
Re: [TMIC] Re: tmic-digest Digest V2008 #478
> Talking about looking pregnant and I'm a male. My belly bloated > up > so bad, that people said I looked like I was pregnant with twins. Many gain abdominal girth while on cortisone/prednisone, or soon after. The bloat is secondary to the cortisone which causes increases in the lipoid cells. This results in weight gain, increase in blood pressure, borderline diabetes, and hyperlipidemia ( increased cholesterol or triglycerides). This group has been named the Metabolic Syndrome. I was attacked by this beast several years ago, but decided to go on vacation to mexico, the change in diet, increased activity made my diabetes, hypertension, weight and lipids go down. My suggestion: When given a new diagnosis, go on VACATION !!! F
[TMIC] OT Holiday Cheer OT
The Benefactor of the Ball Va. Man Spends $1 Million on Inaugural Package for Disadvantaged By Michael E. Ruane Washington Post Staff Writer Thursday, December 4, 2008; A01 It was billed as the biggest, most eye-popping of the inauguration hotel packages: the JW Marriott's $1 million "build-your-own-ball" offer. You get 300 rooms, four suites, $200,000 worth of food and drink, and a primo site overlooking the Pennsylvania Avenue parade route. And it was snapped up within hours of Barack Obama's election as president by a customer the hotel declined to identify. This morning, the Marriott is scheduled to announce that the buyer is a Virginia businessman who wants to bring to the inauguration disadvantaged people, terminally ill patients, wounded soldiers and others down on their luck. Earl W. Stafford, 60, of Fairfax County, the founder of a Centreville technology company who grew up as one of 12 children of a Baptist minister, said he will provide his guests lodging, food and special access, as well as beauticians, gowns and tuxedos, if necessary. Stafford has paid the $1 million, a spokesman said, and is prepared to spend $600,000 more for a breakfast, a luncheon and two balls at the hotel. Stafford said he hopes to recoup some of the $600,000 from other sponsors, yet to be recruited. "We wanted to . . . bless those who otherwise wouldn't have an opportunity to be a part of the great celebration, the inauguration and the festivities," he said in an interview yesterday. "Our objective is to bring in a cross-section of society -- those who are distressed, those who are terminally ill, those who are socially and economically disadvantaged, those veterans who are wounded and served our country." Stafford said the idea was inspired by his deep religious faith and the good fortune that has come his way. The inauguration is an opportunity to remember the less fortunate and remind the country of its traditions of benevolence, he said.
Re: [TMIC] Too Cold
> I also will ask her about "cattywhompus". Is this a disease that > medicine > can fix or do I have to go to Frank for the "cure" for it? I'm > not too > sure about going to him... Dear Jude, my temperature system is cattywhompus too. my left side ( hand, arm, thorax, leg and foot) go from too cold to too warm. I have increased blood flow in my left hand so much so that my fingernails grow twice as fast as on my right side. My left hand/fingers are so sensitive that I have to have someone to cut my nails every few days. I wish I had an answer... death is not the answer... A double Bourbon or margarita does help. frank
Re: [TMIC] Re: tmic-digest Digest V2008 #431
> They were never able to locate a lesion on my spine and from what I have read > on the message forums this is true for alot of people. Lynne, Perhaps you had multiple microscopic lesions F
Re: [TMIC] Re: tmic-digest Digest V2008 #431
> i have a question, has anyone else been told that they don't have > > lesions on their spine? my neuro says mine is just swelling from c6-t3 > and > t9-t10., so what does that mean? What does swelling from c6-t3 > and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F
Re: [TMIC] A thought-OT
Ya know why men don't marry sheep, because they flatulate in bed, then try to direct the smell out from under the sheets- or is that why sheep don't marry men?? pH
Re: [TMIC] Caregivers
What a horrible thing to happen!! My "Caretaker" is my girlfriend/ companion. I give her hours "Off" during the day- today she's off with the lady's club, taking crab salad sandwiches for after the meeting and lecturer. She goes out with other ladies, shopping, museums, etc. When her internet carrier was too slow for me, I got ultra-fast cable along with 400 channels, then created her own website and e-mail for less that she was paying for DSL When I figured out that her house was too big for her to clean, I found a two bedroom apartment- I love Craig's List- so to rent her house and live in in the comfy little place. Now she has income of her own which helps her spirits. She works hard for me. So I work as hard as I can to make her life with me special. my 2 cents F
Re: [TMIC] Neurontin again
>Frank, you take it, don't you? I tried Neurontin in 2001. It made me too sleepy so it was stopped. In August 2001 I saw Dr. Kerr who started me on Marinol, Phenobarbital and Nortriptyline. If anyone is thinking of stopping Neurontin, tell your doctor before, AND TAPER DOWN slowly Good Luck F
Re: [TMIC] NEURONTIN
Greetings from Maine, Never forget the fundamental principle of Physician/Patient/Placebo/hypnotic effect. Let's say that I'm the Doctor. You have waited 20 plus minutes, dressed only in your socks and a cold paper "Smock." I enter the room in my dressed like marcus welby MD. I tell you I know your disease, what is wrong with you (Hog wash) and tell you to take these pills and your pain will decrease. Your pain decreases even though the pills were sugar. Physicians have been using this for thousands of years!! To understand would take lots of time and effort- Eight to twelve years perhaps. F
Re: [TMIC] NEURONTIN
> More bad news from Big Pharma. Dear TMers, This email is true! Take care F
Re: RE: [TMIC] Question from Randy
> Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F
Re: [TMIC] thanks for your input - tell me more about meiners
> I have the same bee stinging feelings from head to toe, especially at night. That feeling is central neuropathic pain. Try Dextromethorphan 60 mg twice a day, or cannabinoids (MARINOL 5 mg every 6 hours). The Fentanyl and Vicodan will turn you into an addict Good Luck F
[TMIC] message error
I am so sorry I sent the email about social security to the list.I meant to send it to a friend,and checked the wrong contact in my address book. Cheryl in MA.
RE: [TMIC] truth in labeling
Well said Rob. Cheryl --- On Tue, 10/28/08, Robert Pall <[EMAIL PROTECTED]> wrote: From: Robert Pall <[EMAIL PROTECTED]> Subject: RE: [TMIC] truth in labeling To: [EMAIL PROTECTED], "Sally Wilkinson" <[EMAIL PROTECTED]>, tmic-list@eskimo.com Date: Tuesday, October 28, 2008, 9:58 AM I cannot believe how much discussion this topic has yielded. This is not that difficultsimply do not discuss non TM matters with the group. I have no problem with a member discussing spiritualiy as a form of coping with our condition...simply leave out religion, politics, jokes etc. from the site. These are topics you can share with specific members...but not to the entire list. We should always consider how a new member looking for information will respond to non TM issues. We have had numerous cases of members unsubscribing due to these emails.The so called dirty topics are certainly not "dirty"...but simply problems related to the condition and do not need to be labeled "mature". All we must do is stay on topic and use common sense. Rob in New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, October 28, 2008 9:43 AM To: Sally Wilkinson; tmic-list@eskimo.com Subject: [TMIC] truth in labeling Good Morning from Montreal, I agree with Sally!! We need to develop code which will be put in the subject line: We use OT for off topic. We need to come up with an abbreviation for blessings, and other religious stuff. How about PTL (praise the lord)? GBY (God Bless You)?? And Mature (Adult) matters such as lack of sex, too much sex, trouble recharging batteries, erectile dysfunction- which has it's own (ED)- orgasmic dysfunction, allodynia making physical intimacy impossible...I could go on and on. Let us pick MM (Mature Matures). Then we have "Dirty" topics dealing with urine, bladders, feces, colon and we should add bed sores- I hate reading about bed sores!!. How about a simple DT (Dirty Topic) I can't think of any more, so please help me Your humble savant, pHranq3ue
[TMIC] truth in labeling
Good Morning from Montreal, I agree with Sally!! We need to develop code which will be put in the subject line: We use OT for off topic. We need to come up with an abbreviation for blessings, and other religious stuff. How about PTL (praise the lord)? GBY (God Bless You)?? And Mature (Adult) matters such as lack of sex, too much sex, trouble recharging batteries, erectile dysfunction- which has it's own (ED)- orgasmic dysfunction, allodynia making physical intimacy impossible...I could go on and on. Let us pick MM (Mature Matures). Then we have "Dirty" topics dealing with urine, bladders, feces, colon and we should add bed sores- I hate reading about bed sores!!. How about a simple DT (Dirty Topic) I can't think of any more, so please help me Your humble savant, pHranq3ue
Re: [TMIC] question about post
I'm not against requests for prayers,I requested them over 9 yrs ago when my
first great grandson was born weighing 2 lbs1 oz.
I'm talking about the other religious emails.I'm drawing a blank on how to
explain what I mean;could someone else please explain it for me?
Thank,Cheryl
--- On Sun, 10/26/08, CANDIS KALLEY <[EMAIL PROTECTED]> wrote:
From: CANDIS KALLEY <[EMAIL PROTECTED]>
Subject: Re: [TMIC] question about post
To: "TMIC"
Cc: "Jenna" <[EMAIL PROTECTED]>
Date: Sunday, October 26, 2008, 3:03 PM
#yiv963255076 {font-family:'Times New Roman';font-size:12pt;color:#00;}
I personally believe in prayer and its healing and comforting abilities.
Requesting prayers and praying for one another is the humanly response. We all
may not believe in the name of who/what we call our "higher power", but I do
believe in a "higher power" which I call GOD.
I vote for anyone requesting prayers, directly or thru other members, should be
allowed. Those who do not believe in a "higher power" do not have to
participate.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: "Jenna" <[EMAIL PROTECTED]>
To: "TMIC"
Sent: Sunday, October 26, 2008 1:48:10 PM (GMT-0500) America/Bogota
Subject: [TMIC] question about post
OK I have a question. Is it still OK to post information about people from the
list that are to sick to post and/or are in the hospital? And some of them are
asking for prayer and thoughts. I have updates from people on the list but now
I am not sure if that bugs people too??
Just not wanting to make any mistakes or make anyone mad.
Jenna
[TMIC] ot. for PRESIDENT: OT
..this list is not to be used to discuss > politics,religion,race etc I am very sorry for my outburst. I have been very involved in both the Canadian and U.S. election campaigns. I find politics takes my mind off my constant central (neuropathic) pain. humbly, f
[TMIC] re:guidelines
Hi Everyone, The list shouldn't be clogged with any political,religious,etc. messages.Just letters pertaining to tm. From a personal standpoint,I find it easiest to block the addresses of the people that send mesages I do not care to read. Cheryl in cool,sunny Easthampton,MA
[TMIC] OT: ... for PRESIDENT: OT
GARY, My daughter attended the Univ. of Chicago. I have met and talked with Obama in Hyde Park, IL. . He will improve Medicare (McCain will not). He is in favor of embryonic stem cell research. I was a republican- voted the straight party ticket since a child, even was a delegate to the Maine Republican convention. I've already voted for OBAMA F
[TMIC] OT: NEMO for PRESIDENT: OT
A Liberal Socialist Cat Promises to lower the cost of litter Promises to check ALL food for melamine Promises to provide mice in all homes... pH (I'm Back)
[TMIC] OT: New Company Policy
Dear All TMers, I would disagree with the original e-mail. Barack Obama will be a great president. He has an IQ of 140. He is physically fit. I would direct ypu to Google Colin Powell's endorsement of Obama. I have already voted for Obama, as I'll be here in Montreal through election day. My grandfather- A liberal organizer ( In Canada)- told me to vote early, and vote often!! So get an absentee ballot, if needed, and vote! Thank you for your time. F
Re: [TMIC] Questions
> Yes, I was told my TM was caused by a virus, but I have never had a cold > sore in my life. T.M. is caused by viruses that don't cause cold sores. My TM virus was probably a Coxackie (sp?) virus Hope that helps F
Re: [TMIC] FLU SEASON APPROACHING.. SKIP THAT VACCINE AND DO THIS....
There is a recent medical report that shows that using cannabis every day prevents colds and the flu. F
Re: [TMIC] restless legs?
Trudy, You need to have an evaluation by a Physiotherapist. I'm just a patient following orders. F
Re: [TMIC] restless legs?
> Is there something else I can take instead? I know I n> eed to get back to > exercising You already know the cure. Daily excersise and physiotherapy is so important Daily, every day, make it a habit F
Re: [TMIC] new unusual symptom
>He said it is trigger finger I bet that a majority of us have at least one trigger finger- my left kittle fingerb is affected. Physiotherapy twice a day keeps it working. If you don't, you'll need surgery. Is it "Major Surgery? Yes. F
Re: [TMIC] Injection question
> He said aside from upping my meds he > could give me injections (about 200 in each leg) that would last about 2 > months. Has anyone had this done and does it really help? > Ella, What sort of injections? Have you tried physiotherapy(PT)? I do PT every day, sometimes twice a day to decrease spasticity in my hands, arms and legs good luck F
Re: [TMIC] surfer's neuropathy / Primetime: Medical Mysteries
Hi Todd, I watched the show too.I had never heard of this before,but what surprised me was the other surfers in the area had never heard of it.Weird. I have heard people on this list talk about a "spinal stroke",which this compression of blood vessels was also called on the show.Blood flow is cut off,the area swells and damage occurs.I wonder if they try prednisone for the swelling?This wasn't mentioned. Cheryl --- On Wed, 8/13/08, Todd Tarno <[EMAIL PROTECTED]> wrote: From: Todd Tarno <[EMAIL PROTECTED]> Subject: [TMIC] surfer's neuropathy / Primetime: Medical Mysteries To: "TMIC" Date: Wednesday, August 13, 2008, 3:51 PM Did anyone happen to watch Primetime: Medical Mysteries last night. They talked about surfer's neuropathy. When surfing in Hawaii. Where the person on the surf board would bend their back upward and pinch the nerve in the spinal cord. They wouldn't be able to walk once they got back to the beach. The summer before I was hit with a lesion/TM @ T-4 to T-8. I have always said that it started the end of the summer of 2001 after boogie boarding at the beach in Corpus Christi, TX. I wanted to go back out, because it would be the last chance I would have for the summer, but my back hurt, my legs where wobble, and I was very tried, and we where going back home to Austin, TX. I was 38 years old and didn't think I was getting too OLD. At age 5, I fail off a slide head first and broke the right arm and pulled muscles in the ofter arm. Getting HIV+ in Sept. 7, 1989. Then the boogie board in the late summer of 2001. Then TM in April 1, 2002. Has anyone else heard about this and/or was surfing before TM? Todd-44 Corpus Christi, TX TM & HIV meds April 2002 Legs felt wobble after boogie boarding in of the summer of 2001: surfer's neuropathy HIV+ & HBV September 1989 Herpes & Shingles July 1989
[TMIC] re:anniversary
Hi, Well,I guess the tm has finally taken over my mind.I was 49,not 39 when I got tm. Cheryl,who is now 62(I can say I don't feel that old!)
[TMIC] 13 yr anniversary
Hi Everyone, Today marks my 13th year with tm.I was 39. I was paralyzed from T4 down ,and after rehab used a wheelchair and then a walker.Then I used a cane for a while,but now I'm back to the walker. I have numbness from T4 down,except for a few areas of hypersensitivity on my left leg.Strong banding around my trunk since the day of onset.Tingling and burning pain remain a constant.One leg feels any temperature touching it as icy cold,the other as burning hot. I only perspire on the right side of my face.Why,when my lesion was T4-T5?Nobody knows. I look back,and it seems like it hasn't been that long,yet in other ways it seems like forever. There is life after tm,just a totally different one. Cheryl in sunny Easthampton,MA.
Re: [TMIC] Frank's "central pain"
What did you mean in your comment on Marinol when you say "Marinol> did decrease my central pain". Well, what I meant was, Marinol decreased the amount of my central pain. Instead of being a 10 out 10, the pain deceased to lets say 4 out of 10. All other pains decreased too, but Alodynia remained the same. Hope that helps F
Re: RE: [TMIC] MARINOL
> Marinal had none of the benefits of potand to make matters > worse... Marinol did decrease my central pain, and it lasts longer that smoking weed. It also is much more controlled- less euphoria. Sativex, from Canada, is a spray that is better than anything else. f
[TMIC] MARINOL
> WHAT CAN YOU TELL ME ABOUT MARINOL (EFFECTS, COMPARISONS TO OTHER DRUGS> , > ETC...) I'd recommend googling marinol- You'll find out more than I can write... my fingers are not working very well today. F
[TMIC] age at incident
I was 39.I will be 62 on 6/17. Cheryl
Re: [TMIC] Sativex
Greetings from Montreal where I saw my pain Doctor, Mark Ware, on Monday. I was the first person in Canada to get a prescription for Sativex. I take one spritz, under my tongue twice a day. It works for about eight hours, and it's better than Marinol or "The Killer Weed." It comes in a box with four spray bottles. Each bottle has 51 sprays- or Spritzes. So, 204 sprays for $639.99 CND. A little over $3.00 per spray ( $6.50 a day, less than a martini). The big thing for me is that it works and is TOTALLY LEGAL- a big deal for me and my jet-setting life style. I hope you are all able to get a trial soon F
Re: [TMIC] Fwd: Prayer Is So Powerful-OT
Last night God came unto me, and told me the cure of Cancer: "Broccoli"... "And Aspirin"... "Did I mention Prayer?" I fell back into a deep, drug induced, sleep. pH
Re: [TMIC] Neurontin & Pain
Carol, Neurontin is not a medication to be used only when you have pain. I believe that any benefit you get from taking it only when you need it is probably from the placebo effect. Do you know the side effects of neurontin? You should google "Neurontin" ans read up about it. Good luck F
Re: [TMIC] Neurontin & Pain
> Frank, What do you think of Lyrica??? In the same category as Neurontin? > Also Cymbalta? I have no experience with those meds. California has it's own rules. I'd Google, " Medical marijuana, CA" Good luck F Cannabinoids don't mix with Commercial Air travel- rent a small business jet fill it full of MJ and fly it home. [Joke]
Re: [TMIC] Neurontin & Pain
Dear Carol, Neurontin is not a PRN (Take when needed) medicine. It is an anti-seizure med to be taken two or three times a day for weeks on end. It sounds as if you need a new neurologist. For your neuropathic pain you need something like Marinol or Dextromethorphan. Hope this helps F
Re: [TMIC] Misunderstood
> On Sept 1, 2007 you typed, "sounds like a pyramid scam to me." > I also found posts between Jude and Michelle about this subject. Jude felt > the tmic was not the place for Michelle's recruiting. > frank, I quoated you, because I admire your smarts. Patty, et al, My memory is failing, What was I referring to in Sept,07 when I wrote, "sounds like a pyramid scam to me." I wasn't referring to Tupperware, Amway, Shacklee, or Mary Kay. There are pyramid scams out there. When I was young, we used to start "Chain letters" and made a bit of monery, but was told by the postman that " if caught, I'd go to the slammer for hard time." That was about the time my best friend Jimmy Reed's mom showed me tupperware. I didn't look back! f
Re: [TMIC] Bruising
My feet seem to be getting bigger. The bruising remained. > > Then I saw a very good foot specialist who said it was probably the > prednisone. REgina, Prednisone is a nasty medication. 1 MG. IS JUST ENOUGH TO CAUSE BAD SIDE-EFFECTS WITHOUT HELPING YOU. I'd recommend getting a real doctor, a good neurologist!! The swelling may be from the affects of TM on your blood vessels. My legs swell slowly during the day because of nerve damage in my spinal cord. Good Luck F
Re: [TMIC] Misunderstood
-Original message- From: "jrushton" [EMAIL PROTECTED] Date: Thu, 24 Apr 2008 12:01:47 -0400 To: [EMAIL PROTECTED] Subject: Re: [TMIC] Misunderstood > > Name: unknown. > Type: multipart/alternative > Encoding: >Length: 3.59 kB DOES ANYONE ELSE HAVE TROUBLE RECEIVING JRUSHTON'S EMAIL F
Re: [TMIC] Misunderstood
> I am a curious person so I checked into YOUR way "to make a very good livin> > g on the internet". You condemned Frank, because he called it a pyramid. Y> > et, many of us think Frank is a very smart man. ] ]Did I hear someone typing my name??? I didn't call anything a pyramid. I've sold Tupperware (High School), Encyclopedias (College), Shaklee, Cosmetics, Amway. They all work if you work the plan. In my Amway group I had a blind paraplegic who now makes over $100,000 a year. He tells people that wealth was forced upon him. He also tells people that he has a "Get Rich Slow Plan." Good Luck F PS: I've been away- drove to Key West- the bottom of U.S. Route one. It was great
Re: [TMIC] When do you know if it is time to quit!
> If I were you, I'd ask about the possibility of SS Disability . In my > opinion, there's no > sense in working until what health you have is gone!! > I get about $13,000 a year from SSDisability. How does one live on that amount? Are there people who live on that income? They must not go out to eat very often, probably have to turn the thermostat dfown to 55. That's Scary pH
Re: [TMIC] When do you know if it is time to quit!
Robert, Try finding a new profession. Before I finished being a Family Practitioner in 1999, I was learning how to be a writer, then started submitting articles to magazines, then was befriended by a woman who hardly knew me- She turned out to my editor. She'd been reading my articles. I wrote well, but just needed a little bit of help. She would rewrite my articles, then send them back to me. I'd study the changes she made, then rewrite the article again. The first time we did this that document attached to our e-mail went back and forth 12 times, then OK'd, and published. I received a check for $1000. I was hooked, plus I'd found a way to continue practicing medicine the way I wanted, not what the insurance co. wanted. I found that the insurance problems were just too much, and that writing articles for women's magazines paid better, and no-one ever called me up in the middle of the night to complain about the latest sexual position, I'd written about in the issue she'd purchased at the grocery store t! hat afternoon. Maybe you can't write. How about a real Estate broker license? Or doing deed searches for law firms? Or Selling Insurance? Or if you want something even better... AMWAY!! Don't Laugh Amway is a pretty unique company. I did Amway for about 5 years while building my practice. A patient showed me the plan. I worked his plan and made lots of money. It made the difference in the quality of home we had, the location of our winter vacation. I actually recruited several other physicians. My patient (Sponsor) is still doing Amway, but lives in a small mansion outside San Diego, works 15 hrs a week and earns $300,000 a year. So, Change how you earn your money Good Luck- Look in the white pages under AMWAY F
Re: [TMIC] queston
Rob, I was afflicted with TM in 2000. Recently I began having new symptoms and increased pain during the "Medication Valleys". I went for an MRI which showed a cinching in at the level of my lesion (C5). The demyelination was followed by scarring, and the scarring contracted causing the indentation around the spinal cord. This took eight years to occure as the previous yearly MRI's didn't shown any cinching. Now the question is does someone operate?? I think Not!! F JOKE: Descartes was having coffee at a cafe in Paris. The waiter asked if Descartes would like another refill. "I think not." And with that Descartes disappeared !!
Re: [TMIC] Fluid retention
> YOU CAN GET MACHINES LIKE THIS FROM QVC ARE STORES LIKE ACADEMY. I DO NOT > THINK YOUR INSURANCE WOULD PAY FOR IT THOUGH! >TIAD PAM I bought the machine for my patients back when I was a doctor. The machine work well on low back pain! F
Re: [TMIC] Fluid retention
> I'd be so light-headed after hanging upside down I'd have to lay down the > rest of the day. Are you harnessed in or what? How the heck do you hang > upside down?? I get in this "Tilt machine", close an ankle lock around my ankles (foam lined steel; then I raise my arms to my chest and my body tilts back, then I raise my arms to my neck and I rotate upside down. When I waant get off, I just lower my hands to waist level. Try googling Tilt or inversion machine?? F
Re: [TMIC] A month before TM -
> I am one of those weird ones who doesn't really seem to have a cause for my > TM. I wasn't under any undue stress. In my humble opinion, Stress has nothing to do with T.M. Other than TM causes a lot of stress. F
Re: [TMIC] Fluid retention
> I also start the day out with thin ankles and end > up with fat ones. My solution for the dependent edema- swelling caused by gravity and the lack of nerve control of the arteries and veins- is hanging upside down. I put in my ear-buds, turn on my ipod, and flip myself upside down for 30 minutes. Works great. F
Re: [TMIC] UNBELIEVABLE!
> UNBELIEVABLE! I'm really sorry to tell you that I had no stress in my life, no antibiotics, no root canals, etc.,etc, before TM hit. I did have a "summer cold." "summer colds" can be coxaki (?) related and that has been directly related to TM, I believe. Almost everyone has stress... I would make the hypothesis that TM is related to ... Eating any food, or even better, Drinking water !! How many of you drank water (in Tea, Coffee, Sodas, Milk, Mixed in O.J., Etc.) before being afflicted with T.M.??? I bet we all did!! Love You F
[TMIC] STRESS
I was told stress was "maybe" part of what caused my tm.That was a terrible year for me.My son had a mental breakdown,my youngest daughter was getting a divorce,and I was working 4 12 hr (7p-7:30a) shifts as an RN in an acute care hospital's respiratory care unit. I was exhausted from work and visiting my son daily for the approximately 2 months he was in a locked ward in our local VA hospital. But the docs said in the end it was a "virus" that attacked my spinal cord.I was told by another doc years earlier "when drs. don't know what the problem is they blame it on a virus,and no one can prove or disprove it".(Except for the obvious ones like GBS) Cheryl in cloudy Easthampton,Mass. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
[TMIC] Today's mail
Hi Everyone, Today's mail shows just what the list is all about.Someone vents,others respond and a warm feeling is generated throughout. I've had tm since 8/13/95 and this group has helped so much.I don't post often,but I read all the letters and get strength from them. So,thanks for being there,my "family" who truly understands what tm is. Cheryl in Easthampton,Mass. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] requesting advice from you experienced souls
> I get relief by taking 4mg of the steroid Prednizone (sp?) to reduce the > swelling of my spinal cord. Hi, My name is Frank. I was afflicted with TM in 2000. I was given Predisone when I was first treated- They started with a big dose (120 mg) then tapered down to 0mg over three weeks, and that was all I got. Prednisone is a nasty cortisone. You shouldn't be using as needed, it will mess up your whole body, causing high blood pressure, adrenal failure, bleeding ulcers...I could go on. Stop the Prednisone, and find a neurologist who know how to treat TM Good Luck F
Re: [TMIC] Fwd: Sweating
Hey all, TM affects the spinal cord which is full of nerves. Some of the nerves carry sensation, some carry motor signals that make the muscles contract, bones to move, aim my finger at the keyboard and make sure that my finger lands on the right key. There are also nerves that control the flow of blood in our hands, feet, skin, everywhere in our bodies. All these nerves get messed up with the damage to the spinal cord so we get cold, or hot feet /hands, swelling where there shouldn't be any, lack or profuse sweating. I could go on... F
[TMIC] Sweating
Hi, I am affected a the T4-T5 level also,but I don't sweat on one side of my face since getting tm. I also only blush on one side. No one has ever been able to explain it. Cheryl in cold,cloudy Easthampton,Mass. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
[TMIC] OT Getting Ready
> Wondering if everyone's computer got stolen!! Everytime I log on nobody has > anything to say. Everybody ok? I'm getting ready for the spring festival. The equinox will be here on Thursday, so we're busy making the traditional meals. Here in Maine, we celetrate Fertility and Renewal. We sing a lot of "Goldy Oldies", dance, eat, drink and tell stories of how it was before...before it was " modern". We have a great time and try not to sacrifice too many virgins. I have lots to do before Thursday ! ! Take care pH
Re: [TMIC] lidocaine infusion
Janet, The relief lasts up to 4 weeks for me. It seems to work better if I get the next infusion before the relief is totally gone. F
Re: [TMIC] Medical marijuana
> Can't stand the soreness in my throat. I hate handling cigarettes. Brownies are easy, just add a tsp. of cannabis- start with a tsp then slowly increase. Orally does not work as fast as inhaling, expect an hours wait! Good Luck, F
Re: RE: [TMIC] Lidocaine infusions
Neil, Very interesting! I get no "High" from either the IV Lidocaine, or the 60 mg of Dextromethorphan twice a day. I function very well till my energy runs out about noon, then I retreat to listen to music or watch the cooking channel on TV. Dr Sang may have given you higher doses of the Dextrowhich would cause mental "disruption". F
Re: [TMIC] Lidocaine infusions
> I never heard of them, Are they costly? Does it help the burning? Medicare and gap insurance covers the infusion They help immensely F
[TMIC] Lidocaine infusions
Did I mention that I've been getting Lidocaine infusions every 4 to 6 weeks for the past year? The infusions are done as an outpatient. I go in take off the shirt and they put EKG leads on me and start an IV, then drip in 2 to 3 mg per Kg of a dilute solution of Lidocaine- the whole procedure takes about an hour- then I get dressed and leave. The infusions decrease my overall pain so I need less of other meds, have fewer "Bad days", and just feel "Better." The idea came from Dr. Christine Sang at Harvard. Has anyone else tried Lidocaine infusions?? F
Re: [TMIC] Unidentified subject!
> Just seeing if anybody knows of a medication that works better than neurotine > for the burning. (nerve pain) Thanks Cannabinoids !!
Re: [TMIC] marinol use
> Can you tell us why you made the switch from the Marinol to the Sativex, > considering the cost? Are either covered by your insurance? Sativex works faster, longer, less euphoria and just a better experience over all. Maninol is covered medicare drug plan. Sativex is not covered anywhere F
Re: [TMIC] marinol use
Gaylon, My local neurologist, in Portland, Maine, prescribed Marinol for me. There is a peak in the middle of the six hours where you have euphoria. I am now on SATIVEX that is prescribed by my pain doctor in Montreal, Canada.Sativex is sprayed under the tongue, starts to work in 15 minutes, lasts up to eight hours. There are two problems: cost ($640 for 200 doses) and it's only available in Canada. take care Frank
Re: [TMIC] Another unidentified becomes identified!
Rita, I,too, have c4-c5 trouble caused by demyelination on the right side of my spinal cord following a summer viral episode. My symptoms came on slowly over two weeks. I have severe central pain from my shoulders down, left foot drop...I could go on. I'm so happy that I still get around with a cane, or on my hands and knees. good luck Frank
Re: [TMIC] Unidentified subject! for all
Mindy, I have exactly the same affliction as you do !! C4-C5, right side of spinal cord, pain from shoulders down, Left side worse (secondary to Brown- Sequard Syndrome- Google if need be)., handa have the worst pain. Poor balance, decreased proprioception (I can't type as fast as before). Wow !! Frank
[TMIC]
> my neuro strongly recommends swimming Gerry, I don't know how to swim. The water is frozen much of the year here, and in the summer in Maine the water temperature is so cold that most people who fall in, commit suicide- life jackets have a 38 sp.pistol in the pocket. I was lucky, though, as I figgured out that I was smart and going to be an MD- So, I could walk on water!! Hope that explains just another of my problems. pH (N.B. first pH in a long time!!)
Re: RE: [TMIC] question
>..I am hoping to increase my mobility. > Does anyone else with TM do regular exercises? Odile, I exercise every day!! If I didn't I'd totally fall apart. I have latent left foot drop, so I have to stretch my left Achilles tendon, strengthen and stretch leg muscles, arm and abdominal muscles. Good Luck on your exercise regime F
Re: RE: [TMIC] question
> And having TM does not reduce your life span. There are articles dealing with MS that show that the side effects can and do shorten the patients life. For instance, my TM, in and of itself, will not shorten my life, but the chronic pain will. Many people who have chronic pain commit suicide. Don't worry, I promise not to kill myself till next Friday. Before TM, I rode a bicycle, cross country skied, sailed competitively, climbed small mountains, etc, TM stopped all those exercises, so I gained weight and got "The Metabolic Syndrome": Hypertension, Borderline diabetes, obesity and hyperlipidemia. They all reduce my life span, plus the lipitor pill caused Gout. My sensitivity to cold sends me south for periods of time each winter. There are many more diseases to the south: Mexico, Costa Rica. I get cranky a lot, complain to my girl-friend, and she threatens to plug me with her 12 gauge, if I don't shut my trap I'm just a time-bomb waiting to happen ! ! So, Think about how TM will indirectly shorten your life F
Fwd: [TMIC] JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Pam, In all likelihood they keep her at the nursing home because it's cheaper. Even if she goes by ambulance for the treatments,it probably costs less then staying in the hospital full time. Cheryl in Easthampton,Mass. - Looking for last minute shopping deals? Find them fast with Yahoo! Search.
Re: [TMIC] gel cushion
The pillows come in several different shaped, and firmness of foam. F
[TMIC] Annual Winter TMA Symposium???
> You missed the weather Regina [I love your name- very regal !], That's why we went away- to get better weather. I'd never been to Costa Rica. Warm, dry, sunny, great food, ecotourism! The TMA should have a yearly Symposium in February, some place sunny and warm- University of Miami ?? Just an idea F
Re: [TMIC] gel cushion
Try Tempur-pedic ! Expensive but worth it! F
Re: RE: [TMIC] OT Religion
>... we can "praise" God on here > for the miracles that he has given and "thank" God for the prayers that > have been answered and everyone seems ok with that(regardless of their > religious background) New Subject heading: I can get down and dirty on this!! First: It is the belief of my church that the "True God", The God above all gods is female- The Great Mother of all the lesser gods who gave birth to the god of christianity, Budha, Mohammed, etc. I could go on and on... "OT Religion" Use it- have fun pH
Re: [TMIC] OT Politics
I don't want to be judgmental. So lets keep this subject line "OT Politics". that way those who are into presidential politics may have a space within the "T.M. Clubhouse" to discuss, chat, roll around in the muck, really get down dirty I myself am starting a write -in campaign for Clint Eastwood-"Make my day!!" F
[TMIC] Yellow fever
Yellow Fever Shot: Call your Family doctor, or the local hospital emergency room, and ask them where to get the shot. Get it soon, you'll feel like sh*t for several days after- I got mine Friday afternoon!! Also get hepatitis immunization! Have a great time F
Re: RE: [TMIC] political views; amantadiine
Boy!!, I go away for a few weeks and all hell breaks loose at the TMIC club. REMEMBER the rules: No politics- unless it's about medical marijuana or stem cells No religion- unless it's about my new religion. More on this as it develops. No ???- Am I missing something ??? Straighten Up F
[TMIC] A card from Gillian Clark
Dear tm list, Gillian Clark ([EMAIL PROTECTED]) has sent you a Jacquie Lawson electronic greeting card. Please click on the following link to see your card. If your e-mail program has not displayed this as a link, then please copy the following into the Address or Location bar of your Internet browser. http://www.jacquielawson.com/viewcard.asp?code=1395019223462&source=jl999 Alternatively, please visit http://www.jacquielawson.com and select the Pick Up Card option in the menu. Then enter your card code, which is: 1395019223462 If you have any problem at all viewing your card, please click here: http://www.jacquielawson.com/help_1.asp If you do not wish to receive e-cards from jacquielawson.com, please click here: http://www.jacquielawson.com/donotsend.asp Best wishes, jacquielawson.com Our ref: JLC346201672-CS / 1395019223462
[TMIC] Merry Christmas?
Is it really Christmas?? I had no idea... I kept hearing those kind of songs on the radio, but didn't pay much attention. That would explain all the lights, ribbons, and wreaths across the street. it would explain all those quasi-religious TV shows, too. My God, it is Dec 25th K, so what are you going to give me?? BaH, Humbug pH PS: In Montreal there are delicious hard candies called "Humbugs"
[TMIC] A card from Gillian Clark
Dear tm list, Gillian Clark ([EMAIL PROTECTED]) has sent you a Jacquie Lawson electronic greeting card. Please click on the following link to see your card. If your e-mail program has not displayed this as a link, then please copy the following into the Address or Location bar of your Internet browser. http://www.jacquielawson.com/viewcard.asp?code=1353566913462&source=jl999 Alternatively, please visit http://www.jacquielawson.com and select the Pick Up Card option in the menu. Then enter your card code, which is: 1353566913462 If you have any problem at all viewing your card, please click here: http://www.jacquielawson.com/help_1.asp If you do not wish to receive e-cards from jacquielawson.com, please click here: http://www.jacquielawson.com/donotsend.asp Best wishes, jacquielawson.com Our ref: JLC346201672-CS / 1353566913462
[TMIC] It is that time of year
Dear TMers, It's time to think of others, like the Transverse Myelitis Association!! Making a donating is a great way to help others. Donating to the T.M.A. increases your "Kharma." Time to send them a check: $5.00, $10.00, $20.00 or $50, or more. The address is on the web site, or perhaps someone knows it from memory. I mailed a check last week, my annual donation. The very next day, I received a letter from the I.R.S.. They had recalculated my taxes for the last FIVE years, included was a check for $39,311.00. That afternoon I found a hundred dollar bill. We went for dinner; half way through the meal, the chef emerged, came to our table and asked how everything was. "It's wonderful," we chorused. He responded, "I'm so glad, so with pleasure, you all are my guests this evening." So, SEND A DONATION. GOOD THINGS ARE WAITING TO HAPPEN TO YOU!! Frank
Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.
Grace, Thanks for letting us know. Can you give me the name, address, & phone number for the hospital she's in? Thanks, Sally _ Free information on hiring a Business Consulting Service. Click here. http://thirdpartyoffers.netzero.net/TGL2221/fc/Ioyw6i4twAr1RYndyYXre7uRhJVBvHYQtjg2PYJeRt3llE0xEzzoSa/
Re: [TMIC] unsubscribe
okay. I must not have done this right! Please tell me again how to 'unsubscribe'. Thanks, Sally
[TMIC] unsubscribe
Please take me off the list for the time being. Thanks, Sally
Re: [TMIC] thanks
Yes, Larry and Jenna, moving from Hawaii to the mainland does seem backwards. But isn't that kinda what TM does to our whole life - everything that used to work, now seems upside down and backwards? :) (Just kidding - it seems that way, but at the same time I'd be the first to admit that negative events sometimes bring positive opportunities that we might otherwise have missed!) Happy Winter to us all, from one who's spacticity worsens when the temperature drops below 77 degrees! Sally
[TMIC] thanks
I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all, Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area!
Re: [TMIC] folding grab bar
> A few months ago I installed grab bars on the wall on each side of > the toilet. When they are not being used, they fold up against the > wall. Each bar is a loop with the bottom offset inward and below the > top - I use the lower level initially and switch to the upper to I ran into this grab bar last night in a Motel 6 in Southington, Connecticut. It was very helpful even for a cane user!! F
Re: [TMIC] wobble boards
> has anybody tried a wobble board I used to be able to use a wobble, but can't any more. I wish there was a cure for the balance, loss of proprioception. Take care F
Re: [TMIC] TM and Blood pressure
Larwence, I am on Lisinopril for BP. I need only 10 mg for good control. no side effects either. Now the question is, Do you have central pain (Numb, squeezing, tingly, sharp, spastic) ?? I use Nortriptyline for both pain and depression. A Tricyclic antideppressant has few side effects if started slowly, and increased dose slowly. I know other patients who are on newer antidepressants for depression along with the Nortriptyline. Good Luck- Do your Physio every day!! F
[TMIC] SSDI
Hi Everyone, I haven't been able to participate too much lately, because I still have trouble sitting at the computer for more than a few minutes (due to pain), but I have to share my news with you: I just got a letter from SSA saying that the judge has made a 'Fully Favorable' decision in my SSDI case! There's still some red tape before I actually see any money, but after 2 1/2 years with no income, what's a few more months! At least I'm making progress here, after 2 SSDI denials (one telling me that my TM wouldn't last as long as 12 months, even though at the time I'd already had it for 2 years!) If anyone's looking for a good SSDI attorney, I've been really happy with mine. And if he didn't before, he now knows a bit about TM! :) He's the brother of a friend of mine and is licensed to practice in all 50 states (I live in Hawaii; he lives in Texas). If you're interested, his name is Jonathon Healy; you can email him at <[EMAIL PROTECTED]> Thanks everyone, for all your input that has helped me in 'surviving' this challenge, as well as for information that helped to make my case, etc. Love, Sally
Re: RE: [TMIC] OT hello?
> Okay. NOW we all need to see a picture of you Frank. :) O.K., but how do I do that? Do I send the jpg in an e-mail to the list server? I think not!! Tell me great computer wizzes. F
Re: RE: [TMIC] hello?
> Did you not take an oath and did you not swear by "ii. by" Apollo the > Physician and by Asclepius and by Health and Panacea and by all the gods as > well as goddesses, > I am very glad that you are > here. not just for your medical advice but for your "unique" humor.. and of > course your good looks!! AH SHUCKS ! ! !
Re: [TMIC] hello?
>isn't it > always prudent (with a drug such as Valium, with a high degree of addictive > tendency) to advice a patient to maintain the prescribed amount the doctor > wanted > the patient to try for a while? Oh Jude! I used to be an M.D. along time ago. I don't "advice" anyone, anymore- I don't even advice myself. I only command people these days. I've been thinking about starting a new religion, and commanding sounds so religious. pH
Re: [TMIC] Unidentified subject!
> I'd buy it in a heartbeat if I knew where to find it. Grace, Try the white pages, under Amway. Or try the Amway Web Site F
Re: [TMIC] Unidentified subject!
>But I didn't >make that much money until I started working on the internet about 9 years >ago. It took me a while to figure it all out, but now I am making almost >$10,000 a month on the web. Sounds like a pyramid scam to me. If you need extra money, I'd recommend selling Amway. I have sold Amway twice in my life- I'm not now, so don't write me. If you follow the protocol, you can make a fair amount of money. I have an acquaintance who is a blind paraplegic, wheel chair bound, who earns more than $10,000 a month. He's been selling the business for more than 20 years. He started off slowly, obviously, but was making a living after one year. As he says, "Almost everyone uses soap, and those who don't, I don't want to work with." hope that helps, F
[TMIC] SSDI tape
Someone sent me a video tape about getting SSDI and said to keep it until my hearing. I no longer need it (I'm awaiting a decision) and am not sure who to send it back too. There's a return address on the box: MSersLIfe Library% Rosa LYnn Cass in Indiana, but I just want to be sure that's who I return it to, since it's been about 1 1/2 years that I've had it. Sorry I don't remember your name & email, but if you're the one that arranged to have this sent to me, please let me know if this is the correct address to return it to. AND THANK YOU SO MUCH for the help. My lawyer said he's talked to the judge's assistant, and she said she's recommending that he approve the case (without a hearing) but you know how that goes - I won't know for sure until they say so - which my lawyer said would be 1st of Sept, at the soonest. Best wishes to everyone out there. I seldom write or even read lately, as it's still a bit painful to stand or sit at the computer due to left hip pain - but getting a bit better. My prayers are still with all of you. Me ke aloha, Sally
Re: [TMIC] hello?
> Valium (Diazepam) > taken would eventually stops the spasms so Ican go to > sleep or at least > sit comfortably.Now it seems as if I need to take one > more often > than I have been. > > My prescription calls for one tablet twice a day--should I try to get > my > doctor to prescribe them more often, or see my neurologist to and try > > Baclofen again or is there something else? Your thoughts. Pharmacies only give certain ammounts of meds, determined by how often you are supposed to take the meds. If you are taking Valium 3 per day, when the prescription says 2 per day, you may be labeled a drug abuser. Get your doctor to write a new prescription!! F
