Please use a Center of Excellence

March 10, 2011 at 3:10 pm

I am very sorry to hear of your diagnosis. One of the things I have discovered is that many neurologists simply don’t know much about CIDP. There are 7 (as far as I know) Centers of Excellence. From my experience, they have the expertise not only for accurate diagnosis, but for guidance with respect to treatment and care. I strongly urge you to visit one of them to get your treatment started in the best possible way, which will hopefully give you the best possible chance to arrest and perhaps recover from this disease. CIDP, as well as the treatments for it, affect each person very differently. IVIG is considered by many to be the first course or treatment, but of late there appear to have been ever-increasing issues with health insurance paying for it. It does have far fewer adverse effects than other treatments. You should ask about both short and long term prognosis, and the pros and cons of each treatment option. Something as simple as “should I have my IVIG infusion in the hospital or at home” is an important question. I chose to have mine at the hospital because the hospital was Johns Hopkins, they are uniquely and expertly equipped to do the infusions, skilled medical staff was available in the event of any problems (I experienced none) and the hospital was only a 30 minute drive. Had it been a 2 hour drive, my choice might have been different. A good doctor will take plenty of time to talk with you and answer your questions. I always went with a list of questions, and kept a log which I called “things better, things worse.” It helped me to recall details of the ups and downs of my illness and, I would like to believe, helped the doctor tailor my treatment. No question is too basic or too foolish to ask. After all, you are the one who is sick, and it is both reasonable and desirable to know as much about this disease and your treatment as possible. My prayers are with you in your quest to beat this monster!