Senior Member
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Join Date: Feb 2010
Posts: 1,215
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Senior Member
Join Date: Feb 2010
Posts: 1,215
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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
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