He suggested I go back to Boston and see Dr. Weinberg, who diagnosed me with a SFEMG. I like this idea. Dr. Weinberg has lots of experience with myasthenia, and he knows my local neuro, and he's only an hour and a half away.

I will ask him if he can suggest any other treatments (my neuro and I can't think of any more we're willing to try); whether my SFEMG was consistent with congenital myasthenic syndromes and/or channelopathies like HypoKPP; what he makes of my "episodes"; what he makes of my getting weak after sitting for a long time; and whether the way my symptoms have changed since I saw him last make this picture any clearer. When I saw him two years ago, seronegative and with two inconclusive SFEMG's, my main symptoms was swaying back and forth at the waist. That's pretty much gone now.

Abby

Are you in the car yet? I have 2 Neuro's and they work together on my case. I have complete confidence in both. I love your regular Neuro he sounds a lot like mine. He is not afraid to get another opinion.
Mike

OK! I have an appointment to see Dr. Weinberg on January 29th. I caught a cancellation. Since it's only an hour and a half away, I think it makes sense to see Dr. Weinberg before I go out to Mayo or something like that.

For anyone who's having trouble getting a diagnosis, if you can get to the Boston area, Dr. Weinberg is an excellent doctor to see. My local neuro did two SFEMG's on me, and although they were mildly abnormal, he couldn't make the diagnosis (because I'm seronegative and have atypical symptoms). But Dr. Weinberg did a "stimulated SFEMG" on me, which is an unusual kind. Instead of having me slightly clench my muscles, he used electrodes to make my muscles twitch (painless--not like an EMG shock). He read the results as strongly positive. He has a lot of experience with MG.

Abby

Interesting! I hadn't heard of that variation of SFEMG for detecting MG. Thanks for posting that!

Got my fingers crossed for you.
Mike

Thanks, Mike. My symptoms have really changed since he saw me last (two years ago). What puzzled everyone last time was my weird gait (swaying side to side from the waist), which destroyed my balance. Now my symptoms are more typical, I think. But I'll be especially interested to see what he makes of my "spells" of weakness. He has seen hundreds of MG patients. I also hope he will know whether my SFEMG was consistent with CMS or HKPP, and if so, where I should go to pursue those possibilities.

Of course I'll be reporting here, to all you kind folks!

Abby

I'd like to see Dr. Weinberg! I am seropositive and definitely have a diagnosis, but I am looking for a new neuro. I live in CT and mine is pretty lame; he's at UMass. I have an appt with one at Yale on March 27th, but would like to check this guy out without delay. I want to get a couple of opinions on thymectomy. I'm tired of living like this. What is his first name and what hospital is he at? I'm an hour and a half from Boston tops, depending on traffic.

Is this him?

Dr. David Weinberg
736 Cambridge St # CCP8
Brighton, MA 02135
(617) 789-2375

Read more: http://www.vitals.com/doctors/Dr_Dav...#ixzz2JKx2kULJ

Yes, that's the one. I'm on my way right now. I hope it works out for you.

Abby

Good luck, Abby!