Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 06-17-2013, 09:48 PM #7
bny806 bny806 is offline
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Join Date: Nov 2011
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bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
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I am still technically undiagnosed, but I do get IVIG for this mystery illness - going on over 2 years for me - onset post partum- the epidural caused me to almost get intubated, and then a surgical procedure gone wrong a few weeks later and It was all downhill.. My neuro is very close minded - if the tests are negative you dont have it! When I mentioned seronegative MG - he looked shocked, and said yea, guess that could be something - ugh!

I also wonder about seronegative LEMS.. but he is even more close minded to this idea.. however, I get my IVIG.. so I stay there.. whatever I have responds to IVIG.. and I can't breathe or hardly move without it.. sooo who knows

Mentally, all of this would be so much easier if I had the answer - though you still can't predict what's going to happen with each disease name, at least you have some sort of idea... limbo land is stressful!!
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