Marie: Doctors have their opinions--and you have yours. I just got back from my (local) neurologist, and she still says my diagnosis is Transverse Myelitis. Dr. Kerr is sure it was caused by the B-12 deficiency. Whatever--the results are the same. I'm not taking anything for my burning, tingling feelings either: the side effects of the medications I have taken were worse than the pain.
But really: if the heat is bothering you: and we know it does; you may not be able to perspire below the affected area--your neuro surely would realize that it would be dangerous for you especially in this heat if your body could not cool itself! Be sure to write your symptoms down and give your doc a copy every time you go in. Make sure he can explain your condition to you in plain language that you can understand. If you don't advocate for yourself--you will not get the care that you need. My husband just came in from a supervision session with some colleagues at the VA hospital, laughing because they told him someone got a wallet-biopsy!!!! I know the feeling. Cora > Good morning Jill, > > I'm not taking anything at this time for the burning, tingling feelings. > I tried Lyrica and Cymbalta and both gave severe diarrhea > (uncontrollable). Both caused weight gain and I certainly don't need > that. My neuro doesn't seen to think my TM is anything to worry about. > He sees I am able to walk so he just says see me in 6 months and that's > it. When I try to explain my new aches and pains and other symptoms he > says get better control of your diabetes and you will do fine. Sometimes > I think what's the use of even going to the Dr. My lesion is at the C 2-3 > level. I can't take the heat since TM came along. I walk unassisted but > have trouble with balance. I stumble and stagger. > Hope today is a better day. > Marie in sunny Fl > > > ----- Original Message ----- > From: Trudy > To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com > Sent: Wednesday, August 09, 2006 9:22 AM > Subject: RE: [TMIC] Crazy Question > > > Jill > > I have had TM for four years and Barbara describes it exactly as I have > experienced it. And Tegretol amost did me in. My neuro was on vacation > and when she got back I was in a very, very bad way! My liver started > shutting down. Baclofen did nothing for me. I am now on Lyrica the > latest drug "of choice" very similar to Neurontin. I too have that worry > of TM turning into MS at any time. I have experienced "flare ups" at > times also. > > Trudy > > > > > ------------------------------------------------------------------------------ > > From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] > Sent: Tuesday, August 08, 2006 8:55 AM > To: [EMAIL PROTECTED]; tmic-list@eskimo.com > Subject: Re: [TMIC] Crazy Question > > > > Yes, it's very normal to have little flare-ups. I would often fear > another attack was coming on during the first year or two, but in my > case, it never got quite to the extent the first attack reached. I was > seeing my neuro often the first several months and he would assure me > that it was just a flare-up. He said that the TM affects the nervous > system in such a way that it's like it is oversensitive to stimuli, so > even things like not getting enough sleep or having a cold or having > stress (even "good" stress, like getting ready for company to come) > could make symptoms flare up a bit. But some times there was no reason > that I knew of -- things would just get worse for a while. Even now, > almost 11 years later, though I've kind of reached a plateau, there will > be some days when I'll wonder what in the world is going on with me. I > kind of think of it as riding the waves (though I'm not surfer and can't > even swim :-) ) -- but I try to tell myself, "This is just a flare-up -- > just ride it out for a while and things will be normal again." Of > course, after TM hits, "normal" is different from what it was before > anyway. :-) > > > > That said, though, don't hesitate to call your dr. if things are flaring > up to the point where it is scaring you. And ask about different > medications -- Kathryn mentioned Baclofen. That didn't do much for me, > but it helps a lot of people. I was on Tegretol for a while -- my neuro > said it was used for epilepsy patients but had a "quieting effect" on > the nervous system in general, so was sometimes used for TM patients. It > really did help, but they have to check your liver functions often when > you're on it. I decided to get off of it because I was afraid of > long-tern liver damage (though that may be unfounded, I don't know). But > I wouldn't hesitate to try it again if I felt I needed it. We all have > different body chemistries and different things, or different > combinations of things, will be helpful to different people. > > > > Barbara H. > > http://barbarah.wordpress.com/ > > > > In a message dated 8/7/2006 11:16:36 PM Eastern Standard Time, > [EMAIL PROTECTED] writes: > > Although I feel I'm VERY fortunate to be able to walk unassisted, I > feel like I have "little flare-ups" from time to time with my left leg > and right foot going numb and even feeling like a raw/burning feeling. > Is that normal? > > I also feel like a tingly feeling in my head sometimes? > > I don't know if it's just driving me crazy and I need an ativan or is > it just the TM reminding me that it's there lurking and ready to come > back or even turn into MS. > > This has been for about a week or two now. > > I was diagnosed in Dec. 2005 and have made great strides since then > thank God. > > Jill > > 36, Chicago > > T 10-11 > > > > > > ------------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.405 / Virus Database: 268.10.8/414 - Release Date: 8/9/2006 >
