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Old 02-09-2011, 09:54 PM
Stellatum Stellatum is offline
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Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
It might even be a good idea to consider seeing the doctor that Stellatum/Abby saw in Boston.
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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"Thanks for this!" says:
AnnieB3 (02-10-2011), pingpongman (02-10-2011)