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Originally Posted by AnnieB3
Abby, I think I've asked this before but have you looked at your childhood photos? Have you taken photos of yourself now? Keep the lighting, angle and distance from your face the same each time. I know you say that you don't have ptosis but are you sure?
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My eyelids look the same as each other, but the distance between my pupil and my eyelid is smaller on the left eye. I noticed that months ago because I was looking for ptosis. But it seems constant--I mean since I noticed it, it's the same every time I check it, whether my eyes are feeling strained or not, or whether I'm in the middle of a weak or strong period (I am, by the way, feeling very strong these past few days! I have been doing wonderful things. I know my strength could go away tomorrow, so I am trying to remember that as long as it lasts, it's a gift.)
We had a family reunion a couple of weeks ago. All seven of my siblings came. I was checking eyelids!
I will poke around on FaceBook and through some old albums.
Quote:
Originally Posted by AnnieB3
So since you're questioning things . . . are you sure it's a lack of acetylcholine and not too much of it?
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As far as I know, Mestinon doesn't help me or harm me. If I take too much, I get twitchy. But it doesn't seem to make me either weaker or stronger. So I have no basis for thinking either that I have too much acetylcholine or that I have too little.
Quote:
Originally Posted by AnnieB3
Did your doctors look for a R-CMAP? It's where there's an extra muscle potential on an EMG. Some doctors might think it's feedback or not know what it is.
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I don't know...I know that the doctor who did my first two SFEMGs (and regular EMGs) was the local (= Rhode Island) expert on diagnosing neuromuscular diseases; and that the doctor in Boston that _he_ sent me to was considered even more of an expert....
Quote:
Originally Posted by AnnieB3
I think that you should consider going to Mayo Rochester or UC Davis. They are the only ones who can tell you for sure. They will usually only see patients who have a positive SFEMG, which you do have.
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I am going to give the Imuran a year, because in light of my history and my family's history of autoimmune diseases--and the fact that I came down with MG right after a big Graves' relapse--I think it's a reasonable risk. After a year, I will push for Mayo. I think that after a year's trial, my current neuro will be glad to refer me.
Thanks for the PDF! It helps my peace of mind to collect information, even if nothing medical comes of it. I feel much more in control when I'm up to speed.
Abby