RE: [TMIC] Crazy Question

[Trudy]

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