Maurice--Right now, I'm only taking mestinon...My doctor hasn't attempted to prescribe prednisone to me, although I have a bit of an idea why she hasn't....I've been having plasma exchanges (going through 3rd set of treatment right now) and IViG once...I hope that the thymothymectomy will help. which I'm having in less than two weeks *going down roller coaster feeling*
Joan-- I do the same thing for swallowing (holding the chin down to my chest)
Here's another question...Do you guys find that you can't move certain facial muscles anymore, or it's really difficult to? I can't, for the life of me, roll my lower lip down...It's not really a big deal--I don't need to do it, really--but I wonder if some of the muscles just stop working if they've been weak for too long...I'm pretty sure that I stopped being able to do that a really long time ago, but because I didn't know that it was a symptom of a disease, and it was so subtle, I never told my doc. about it.
Do you know what I find miraculous, though? When I'm at my weakest, I can't elevate my tongue to touch my back right teeth...This will persist for weeks...Last time I had plasma, I was able to do it! It was so amazing!
Anyway, I'm so glad that I found this site...It's such a lifesaver to have people to relate to....Thanks guys