Member
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Join Date: Nov 2011
Posts: 576
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Member
Join Date: Nov 2011
Posts: 576
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I'm so sorry to hear your family is going through all of this!!!!
As far as seeing improvement by now.. it's hard to say... many people are tough cases that don't see improvement with so many treatments.. many people with MG don't respond to mestinon, many don't respond and even get worse with prednisone.. many don't respond well to IVIG either.. some require plamapheresis/plasma exchange, other immunosuppresants etc..
As for myself, I don't have a firm diagnosis, but I have something neuromuscular.. I had 3 days of IVIG inpatient.. and had very slight improvement (it also made me quite sick causing aspetic meningitis).. so I felt weak from the meningitis and was better, but not overwhelmingly so.. however the 2nd round of infusion (had 3 days in a row 1st round, then 3 weeks later had 1 day).. about 4 days after the infusion I felt cured.. though that feeling wore off with the IVIG.. from what I hear it takes many people several rounds to feel improvement, though they still might not feel any, as they just don't respond with it..
Otherwise, I always believe in 2nd and 3rd and even 4th opinions with such big issues, ESPECIALLY with neurology, as it seems to be very subjective, and nonconclusive ...I'm sorry yall have to go through this.. and sending her well wishes
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