Welcome to the group. We understand what you're going through!

I'm going to try to do a summary of the typical diagnoses and treatment around here. It's just based on my impressions from reading this board for about a year and a half. I'm trying to give you a sort of lay of the land.

The majority of people who post here were diagnosed by blood tests. Of those, the majority are AChR-antibodies positive, but we have a handful of MuSK people, too. I can't remember any LEMS people since I've been here. But a significant number of us (including me) have never tested positive with antibody tests. Of us sero-negative people who are diagnosed, most of us were diagnosed on the basis of a SFEMG. I'm not sure if we have anyone here with negative blood tests and a "normal" SFEMG who is diagnosed based just on symptoms, but we might. It isn't unheard of.

I've noticed that quite a few of us who were having trouble getting a diagnosis finally got one from a neurophthalmologist, even if, as in my case, eye symptoms were mild.

I'm pretty sure all of us have tried Mestinon. It's considered a safe drug, so many neuros are willing to prescribe it if they suspect MG, even before they do any testing. Mestinon helps the majority of us, but not all of us (including me). A few people can't tolerate the side effects (mostly GI), but most people don't have trouble with that.

IVIG seems to help the majority (are you noticing a pattern here?) of the people who try it, though some of us find it didn't help much the first time or two. IVIG is very expensive and cumbersome, so it's used in emergencies (when someone's having trouble breathing or swallowing) or for people with severe symptoms that can't be managed in other ways. A good number of people here have IVIG regularly, usually every six weeks. There are a few people here who need IVIG but who can't have it because they don't have insurance, which is heart-breaking.

An alternative to IVIG is plasmapheresis.

Most people here are on some combination of Mestinon, steroids (Prednisone), immunosuppressants (Imuran, Cellcept) and IVIG. We have one member who had a very radical treatment (someone tell me if I get this wrong): chemotherapy to completely destroy her immune system and then drugs to stimulate it. The idea is to "reboot" the immune system in the hopes that when it starts up again, it will forget it was attacking the neuromuscular junctions. This is, of course, a dangerous and traumatic treatment, but for her it was very successful. I think it wouldn't be attempted unless the disease were severe and refractory (resistant to all other treatments).

I hope you get some answers soon. If you're like me, you'll find the actual disease easier to handle when you're not dealing with all the not-knowing at the same time.

Abby