Reply To: Problems with IVIG
Thanks for the info! I have already talked to Dr. Schilke and he was helpful, but had never heard of this type of a reaction. He suggested I talk to the medical board at the Foundation and I called, but they have not returned my call.
I was aware of the clinical trial, and checked into it, but had no need to change treatments at that time. I believe it is now over, darn it! I have been treated at OHSU for the last 15 years and when first diagnosed, they had a neurologist on staff that specialized in CIDP. She left after a couple years, and since then I have just been followed by the MS clinic. It was my neuro there that suggested that I explore other parts of the country for a specialist that can see me and possibly find a treatment other than IVIG, since she didn;t know of any other options.
I guess I will keep searching….and hoping someone can give me a recomendation as to who I can see that is knowledgable!