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Old 03-14-2014, 07:12 PM #3
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
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My biggest fear in going to John Hopkins is maybe losing the MG diagnosis and then not knowing what I do have. I have no doubt I have MG, I have all the classic symptoms and a positive SFEMG. I was so surprised she asked for a muscle biopsy, that I wondered if it was standard. And then I started wondering, if I was suppose to have other testing. I think all my specialist are comfortable with the MG diagnosis, but all of them think I have another Autoimmune disease too because of all the rapid bowel transit, bouts of anemia and the rashes that wax and wane with the MG,

My MG is getting worse, my breathing is very much affected. I am on 2000 of cellcept for almost 3 months and the MG continues to get worse. It looks like I am going to have to have IVIG routinely. I am still on the prednisone (10 every other day and 660 of mestinon a day. I think I will have to stop working shortly. I was hoping John Hopkins would have more aggressive treatment, but I am a little worried of the risk of losing the MG diagnosis.

By the way, I am so happy you are back
kathie
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