Junior Member
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Join Date: Jun 2012
Location: Midwest
Posts: 40
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Junior Member
Join Date: Jun 2012
Location: Midwest
Posts: 40
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Kay
get your neuro to refer her to another neuro for a 2nd opinion preferably one who has seen other CIDPers and have treated them with IVIG successfully
there are 2 CIDP centers of excellence..,one in Dallas and another in Houston
check out gbs-cidp as well as igliving websites as well
IVIG is treatment of 1st choice for anyone with a confirmed CIDP dx...don't fool around any longer...the sooner you can get your daughter on IVIG, the better the prognosis
since it has affected your daughters hands for the most part, her symptoms are suspicious of cidp madsam, aka lewis-sumner syndrome...that was/is my dx and ivig halted the progression for me after 22 ivig treatments over 13 months...am now in remission and hope to remain so....have permanent sensory and motor deficits and muscle atrophy but ivig rebooted my immune system and has halted the cidp progression
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