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Barbara,
When I first was hit with TM I had facial involvement which did puzzle my neuro who was going for a probable TM diagnosis since there were no lesions seen. I remember that my eyelids would feel stiff...when I would wake up in the morning I felt that I had to use my fingers to open my eyes. My tongue would twitch and my facial muscles felt like wet cement. Even smiling felt like it took effort and I am one of these people that are usually happy and smiling. I still occasionally get these wet cement feelings when I have done too much and feel fatigued. They don't last too long (usually just hours at the end of the day and are gone in the morning). The nice thing is that I have recovered so much that now I am able to do lots more before I hit the fatigue wall so to speak. I feel "almost" like normal.
As for your facial stuff going on..is it possible that it could be anything like Myasthenia Gravis? Doesn't that affect the eyes?
Laura in NC
-------Original Message-------
Date: 05/17/06 09:35:41
Subject: [TMIC] Weird feelings around eyes
When TM first came to take up residence, most of my symptoms were in my left arm and lower trunk and legs. But there was one very very sensitive spot right on top of my head (made getting haircuts interesting -- I felt like I was going to jump out of my skin) and one of my eyelids was at half-mast. The neurologist I saw the first couple of days was puzzled over the eyelid, saying that that was "a brain thing." The MRI and CAT scan showed everything was ok with my brain, though. But when I had PT, the therapist said her chart listed TM and encephalitis -- but nothing had ever been said to me about the latter. I never really went back to question it, though, because I was out of the hospital then and on the road to improvement (and it may be that in my lists of questions I'd take when I saw the neuro, I just didn't think to ask about it).
Eventually my eyelid righted itself, although the sensitive spot in my head remained.
It seems like I remember reading here that TM usually doesn't affect the head. Is that right? Would symptoms in your face or head indicate brain involvement?
Over the past few months I've had these weird feelings around my eyes. I'll look in the mirror, squint, wink, etc., and everything seems to function -- just feels weird. It isn't constant, but off and on. Then last week during one of those weird feelings, one eyelid was a little lower, and the other was open way wider than usual (looked very strange). It righted itself within a few minutes.
I asked my dr. about it, and it said it must be related to the TM. I do have weird little muscle spasm or twitchy things going on in other muscle groups.
Do you think this is just one of those TM things or does it warrant further investigation? Anyone else experience this?
Barbara H.
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