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Old 07-27-2008, 03:07 PM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
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Hey there!I was so glad to hear from you - I've been worried about you.......I truly cannot imagine how frustrated you must be right now, but please know that I think of you often (and pray for you). When do the docs expect ANY results from the lab work? Why can't they figure this out? I just don't understand...............I'm still @ the hospital - 5 days of plasmaphoresis and now 4 days of IV IG - I felt great yesterday afternoon, but am WIPED today, prolly b/c they never let me sleep here......they wake me up to give me xanax - crazy!!!!!!!! Hopefully I'll be home Tuesday. We'll see........





Quote:
Originally Posted by eeyore2 View Post
So far it seems that the only consensus is that it is autoimmune..the current debate is CNS, muscle or some whole body syndrome or a mix of a few of these.

The neuro at Hopkins wants me to hold off on my regular IVIG b/c she thinks that the low dose I'm getting (0.6mg/kg) is not enough to do anything anyway. My past experiences with skipping doses has not been good---we'll see what happens this time

erinhermes--I'm sorry to hear you are still in the hospital..are you feeling any better?
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