Reply To: looking for a CIDP-specialist

November 29, 2013 at 9:23 pm

A doctor (Neurologist or otherwise) who has experience treating GBS/CIDP may or may not be a “specialist”. I think it is important to get treatment from an experienced practitioner, especially at the onset of the disease.

I am paralyzed today because I didn’t have an experienced doctor when I was first diagnosed in the ER. The neurologist that got assigned to me had no prior hands-on experience treating GBS/CIDP patients. Had I been given the proper treatments immediately, I would be walking today.

I am now a wheelchair bound paraplegic because I didn’t have a “specialist”. I believe the chances of improving your quality of life, while living with CIDP, are greatly enhanced by having a good specialist managing your care from the start.

It is never too late to get a second opinion from an expert to make sure you know all the options and potential outcomes. The Centers of Excellence listed here http://www.gbs-cidp.org/home/get-support/centers-of-excellence have expert specialists who may be able to help improve your life. There is more hope for us CIDP sufferers in the proper hands of an expert.