I'm also MuSK positive, and i was told that having an thymectomy was a waste. I had my thymectomy back in 1996, and i just found last year that i was MuSK positive.
Quote:
Originally Posted by korbi_doc
Well, now the frustration grows...my 1st visit with this neuro (supposedly knowledgable in this area) because my repetitive EMG was decremental, he agreed that my dx is MG.....last wk, he now is questioning it because I'm seronegative on both achr & musk abs...even suggested the Mayo clinic....I think these Drs. need to be comfortable themselves with the dx to stay with the plan....then, when I mentioned that on my last cardio treadmill the Dr stopped me cuz of dypsnea that he could not explain, he now wants another treadmill test to confirm or get more info....in the meantime I'm on the Mestinon & do feel better, tho still have shortness of breath with any exertion, just not as bad...but walking is still problematic, slow & not very far...difficult sometimes just to walk out to the barn to feed my horses....
According to Dr A. Vinent, "The Autoimmune Spectrum Of Myasthenia", "there are still patients with typical generalized MG who do not have a serum antibody defined by a laboratory test. These patients often have less severe symptoms & are more responsive to standard treatments than the Musk-antibody positive patients. Since their electrophysiology, thymic pathology & resopnse to thymectomy tend to be similar to those in patients with early AchR-MG,we proposed that they have ACHR antibodies undetectable by current laboratory tests. At least a proportion of these patients have ACHR antibodies detectable by an immunofluorescent method using human embryonic kidney cells to express ACHRs at high density."
Wasn't it you Becky who put in her quote? I think I should send this to my neuro doc, he must not have seen this one.....I'm certainly in this category, & am not as severely affected as many of you, tho a long way from normal & can't do many things I could before....boy, am I frustrated...
Sorry for the long post, in the corner  Dottie
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