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Junior Member
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Join Date: Apr 2009
Location: shiloh, tn
Posts: 91
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Junior Member
Join Date: Apr 2009
Location: shiloh, tn
Posts: 91
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Becky, this is frustrating, to say the least!!
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
Quote:
Originally Posted by ras1256
The MUsK is another antibody that was identified as having to do with MG about 7 years ago. After it's discovery, several MGer's previously thought to be seronegative became positive on the blood tests. My neuros, when trying to reconfirm my diagnosis, run both the ACHr and MUsK tests together. The MUsK seems to show more in people that don't have occular involvement right away, but more so in the neck, back, arms and shoulders. Generally, people positive for ACHr don't show MUsK. The MUsK form seems to respond better to certain types of therapy such as plasma exchange, according to a report from the American Academy of Neurology report from 2003. So your doctor wants it for dx and treatment purposes, I'm sure.
It's because of the discovery of the MUsk antibody that I don't believe anyone is truely seronegative - they just haven't found the rest of the antibodies connected with MG yet! I'm one of those people which is why my dx is constantly being questioned.
Hope this helps!
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