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Originally Posted by Jenn220
Annie - Thanks for sharing that article. Seems to me that it's a good thing - connecting international clinical databases and doing population studies / reviews / whatever you want to call it to develop scientific results that can be used for further research or to improve clinical treatment. I know patient recruitment is one of the major obstacles for MG research, due to the rarity of the disease, so (in my opinion, not that its worth much) it's good to see them working internationally and using a database that can help overcome the patient recruitment issues.
It's interesting that PEX was so much more effective than IVIg in the MuSK+ patients reviewed - I saw results from another study comparing the effectiveness of IVIg and PEX, but not limited to just MuSK patients, and there wasn't a significant difference in their effectiveness. That's also interesting that most of the MuSK+ patients were female.
Alice - can you explain what you mean by saying that 2 of the doctors who wrote that article think it's impossible to have a normal SFEMG? I don't know your full story, but I remember reading that you had a hard time with diagnosis and treatment, so maybe is that what you're referring to? I also don't understand the connection between SFEMG and this article, since it seems this article was focused on the limited purpose of describing characteristics of MuSK-antibody-positive patients in these 2 databases, not the accuracy or use of SFEMG as a diagnostic tool. Maybe I'm missing something, since I can only see the abstract and I gather from Annie's comment you can see the full article?
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First, I agree with you that gathering international data is very helpful in relatively rare diseases. MuSK is a relatively new entity and much is not yet known and understood about it, so this kind of data can be very helpful. This is also the first paper I have seen that clearly states that MuSK can be atypical in its clinical presentation and misleading in diangostic tests (such as the tensilon test), and therefore hard to diagnose.
The point I was referring to, is that the vast majority of the patients (97%) in this series had a diagnostic SFEMG. It also seems (even though it is not clearly mentioned) that the diagnosis was relatively fast. Therefore, the outcome which is overall favorable can not be extrapolated to patients in which it took much longer for the diagnosis of their illness.
And you are right that I was referring to my own experience. The two authors I was referring to are the ones that lead the approach of "a normal SFEMG rules out MG". Although they seem a bit less amendment about it in this paper and also do mention that it is not clear how MuSK affects the NMJ. This is why I mentioned that I think and hope that this will change.