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Old 02-08-2013, 06:06 PM #1
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seishin seishin is offline
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Join Date: Nov 2012
Location: Austin, TX - USA
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10 yr Member
seishin seishin is offline
Junior Member
seishin's Avatar
 
Join Date: Nov 2012
Location: Austin, TX - USA
Posts: 94
10 yr Member
Default frustrated

Getting a diagnosis is really dragging out so much longer than I'd hoped. I just got word I tested negative for the anti-VGCC antibody. I've tested negative on the anti-Musk and AchR modulating, binding, blocking tests. I responded to Mestinon and Tensilon and have the SFEMG this Monday scheduled by the neuro at 9:30am, but I'm concerned.... What if I test negative for that, too?

I think I'd feel more comfortable (since I have home oxygen) cruising along without a diagnosis if not for the short-term disability appeal deadline looming. And the longer I go, the more financial strain I'm under without an income to pay rent & bills.

And if this isn't MG syndrome-related, then what is it? The unknown part scares me a bit since I don't know if this is something I can come back from (my mom had ALS so that's always in the back of my mind....)

I wish I could just the answers....
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