I saw my regular neuro today, who to my great relief accepted the Boston neuro's diagnosis. I am seronegative, my other SFEMGs were inconclusive, and my symptoms are atypical (my worst one is a swaying gait). So I was hard to diagnose. Here's what I learned:

--the Boston neuro who did my SFEMG did a special kind called a "stimulated" SFEMG. Instead of clenching my muscles, he had electrodes on my face. Evidently there are only a few doctors who know how to do these. It must be quite a test, because to him it was very clearly abnormal, though the regular SFEMGs on my arms and legs came back inconclusive. I highly recommend this doctor, who is experienced enough to make a clinical diagnosis under such circumstances. Anyone who wants to know details about him can send me a private message.

--the pulling in my eye may have been caused by the Mestinon. I haven't had it since I went off the Mestinon, anyway.

--Imuran is a good treatment for someone like me whose symptoms aren't urgent. I breathe and swallow fine, and I don't fall. I prefer a safer, slower treatment under these conditions, which made sense to my neuro.

--He thinks I should take the Mestinon even though I'm not convinced it's helping. It may be that in conjunction with the Imuran, it will help, and that will allow me to take less Imuran. Makes sense to me.

--I have Cogan's lid twitch. The Boston neuro caught it. My regular neuro hadn't heard of it. I think Annie on this list has described it. Look down. Now look up quickly. If you have Cogan's lid twitch, your ptotic lid will go up higher than your other eyelid before settling back down into its old ptotic state. Since I don't have noticeable ptosis--maybe a touch, or maybe my left eye was always like this--it's super-cool that the Boston neuro caught this!

--my current neuro knew enough to have my blood tested to make sure I can tolerate the Imuran before starting me on it. Annie warned me about that. While my doctors are secretly studying me, I am secretly studying them <evil laughter>. I'm happy my neuro passed.

Abby