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 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.