Abby thanks for the offer I'll see what my sister says. She is really discouraged with this whole deal. She has a hard time understanding why these doctors can't find what is wrong with her. I tried to explain to her that it is a rare disease and doctors just don't have a grip on it. In my case the trearments are just as bad. It is all trial and error.
Mike
Quote:
Originally Posted by Stellatum
The great thing about this guy (send me a private message for his name) is that I am seronegative (antibody tests negative) and had previously had two SFEMGs: one "borderline" and one mildly abnormal, but not (according to the neurologist who did it) abnormal enough to indicate MG. This doctor in Boston specializes in occular myasthenia, but he saw me even though I have only very mild eye symptoms. He did a different kind of SFEMG (stimulated SFEMG--means he used pulses of electricity to make the muscles twitch instead of asking me to clench them), and he did it on my face. To him the test was clearly positive, and I am now diagnosed.
He also said he saw things about my eyes that he's only seen in MG patients, specifically "Cogan's lid twitch." This is remarkable especially because I don't have ptosis.
I don't know if your sister is close to Boston, but if you could get to him, he sounds like he'd be helpful.
Abby
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