MuSK and AChR negative--now what?
 

I tested negative for the acetylcholine receptor antibodies a few months ago, so my neuro recently tested me for the MuSK ones. I just got the results: negative also.

My SFEMG was "borderline."

With so little evidence (besides symptoms) that I have the disease, I don't have to tell you guys what I'm worried about. What if they decide to stop treating me for MG?

Annie, do I remember your saying at one point that antibodies can fluctuate, and be negative at one point and positive at another? Should I ask my neurologist to test me for the AChR antibodies again? My symptoms have gotten a lot worse since the original test. Should my neuro at this point be testing me for other types of myasthenia (congenital and LEMS)?

I ask because I am thinking of switching neuros, but if there's no reason to switch--if this one is doing what he should--then I'd rather not, because I'm scared that a new neuro might take away my Mestinon and refuse to consider immunosuppressants, which I was reconciling myself to having to take.

Thanks,

Abby