Check in with one of the Centers of Excellence

July 29, 2010 at 1:53 pm

I was diagnosed with CIDP in April, 2007. My doctor at JHH delayed treatment until October to determine whether it would resolve on its own, and when it got worse, started treatment with IVIG. Very positive results were achieved within two months of starting treatments, and after about 14 months of treatments, my doctor started to wean me off of the IVIG. My last treatment was July, 2009. I am and have been at 100% for the motor nerves for quite some time, and approximately 95-98% for sensory nerves. My doctor believes even this will gradually resolve over time. My doctor and I have also become very good friends, and get together socially about once a month. Among other things, we talk a great deal about his research, a lot of incorrect information concerning CIDP on the web and elsewhere, accurate diagnosis, etc.. I have never heard from him that once IVIG treatment is completed, CIDP returns. You do not say where or by whom you have been diagnosed or treated, but there are now 7 Centers of Excellence (as designated by the GBS/CIDP International Foundation, and more are probably coming) which can help patients with diagnosis and/or treatment. My doctor is a leading peripheral nerve physician (along with being a professor of neurology) at Johns Hopkins. JHH is also a designated Center of Excellence. As so many on this site have accurately observed, everyone is different, and what works for one may work differently for another. However, because CIDP is a rare disease, you need proper diagnosis and treatment by a real expert.