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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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HEy there!
Hey there!I just wanted to drop you a quick note and see how you are today/........I cannot imagine how frustrated you must be and I am so sorry for you. Do the docs have ANY idea of what you have, if not MG? I just don't see why it's so hard to diagnose you and give you the medical treatment you deserve . I'm still inb the hospital - 5 days of plasmaphoresis and now 4 days if IV IG - I was pretty worn down - but I was thinking of you Take care and stay strong! Erin
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Originally Posted by eeyore2
I had my Hopkins appoint today. The neuro doesn't think I have MG--they don't know what I have..but nothing straight forward of course. The SFEMG and posititive modulating Abs are non-specific b/c I also have a bunch of other autoimmune and inflammatory markers that are elevated.
They drew a boat load of blood and now I have to see their pulmonary and GI docs..I don't know how long that will take. My J-tube has been clogging or pulling out ~every 2 weeks and my docs down here want me to get one surgically placed...I was hoping to have a solution to this swallowing crap before it came to that.
I'm totally frustrated..and apparently there is nothing that I can do.  |
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