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Old 06-22-2008, 06:08 AM #9
pono pono is offline
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Join Date: May 2007
Posts: 270
15 yr Member
pono pono is offline
Member
 
Join Date: May 2007
Posts: 270
15 yr Member
Default update--

IVIG again "approved"-- infusions were to begin (resume??) again Tuesday.
but home nursing agency referrel went to, knows nothing of IVIG or ever heard of CIDP. and only have 1 part time IV trained nurse.
said they'd do IF i got a port (I can be a tricky start & have had problems--but none recently.)
Since muscle biopsy resulted in so many new problems w/ nerve, pain--I don't want any invasive procedure , surgery. --unless Lifethreatening (my neuro has also adivised)
All this made me very uncomfortable.
anyway, nurse agency also not comfortable so has passed on my case.

will see where this goes & when treatmts resume, how that goes....
DR B has increased dose to 40 g every 3 weeks, 3 hr drip....
perhaps this doasage increase will be beneficial.

Pain & weakness continue. I am using wheelchair -too many falls & injures -don't need more


DAHLEK.... will try to answer your questions -- the situation is complex; affects of TBI further complicate
and Yes, there's auto-immune components and more...

I've been so tired since trip to ortho & migraines. Not sleeping again --pain worse at nite .... challenging days....

Last edited by pono; 06-22-2008 at 06:59 AM.
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