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Old 07-31-2010, 04:05 PM
art chick art chick is offline
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Join Date: Apr 2010
Posts: 132
10 yr Member
art chick art chick is offline
Member
 
Join Date: Apr 2010
Posts: 132
10 yr Member
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Thank you for your advice!! I am so sorry to hear that you went through a crisis like that Marina, as if MG isn't enough hell.

Alison, my doc is planning on plasma exchange prior to surgery too : )

I went to my neuro and got the CT on Thursday and already got the results yesterday, although they were much the same. They still don't totally know but they are leaning toward hyperplasia. My neuro is thrilled because it's a real finding and since it's either hyperplasia or thymoma, it's also a definitive diagnosis after all the negative and normal tests.

Since my second round of IVIG two weeks ago (I am due to start 5 days again on Monday), my strength has improved so dramatically that he feels that we do not need to rush to surgery any more especially since I am on high dose prednisone and it is best taking it down more slowly. So we are starting the taper (going from 50 to 40 starting monday and down every 2-3 wks and then slow at end) and he is looking at Oct. for surgery to make sure I'll be strong which is the most impt consideration for surgery he said. He said his patients are usually only in the hospital 3 days and if there were any signs I wasn't strong enough for surgery, he wouldn't even consider it.

He said the mestinon is covering my true symptoms so I need to go off it so we can see where I am in the disease state to assess my true strength as I decrease the pred. The pred. and the IVIG are what are treating the disease. . .this was news to me.

I am doing pretty good since the IVIG and the pred are covering me I guess and I am just starting to go off mestinon. . . .fingers crossed.

debra
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