Get a good diagnosis

August 16, 2011 at 2:44 pm

May I suggest that you consider Johns Hopkins Hospital. It is approved as a Center of Excellence by the GBS-CIDP Foundation, and its Department of Neurology is ranked #1 by the most recent US News & World Report. At least one of its doctors is one of the medical consultants to the GBS-CIDP Foundation. There are many flights between Florida airports and Baltimore Washington International Airport (BWI). I was diagnosed in April, 2007 by Dr. David Cornblath, at Johns Hopkins, after 5 months of running around to just about every kind of doctor I could think of (total of 30 doctors). The last one was at Hopkins, at which a diagnosis was made fairly quickly. My doctor wanted to give my situation a little time to see if it improved on its own, but after it worsened, I started IVIG treatment in early October, 2007. The results of my treatment have been most successful. My IVIG treatments were done at Hopkins, and they have a superb protocol for the administration of IVIG.

Getting a good diagnosis is perhaps the most important part of this struggle, and I think a visit to Hopkins would be well worth while. People in the Baltimore area take Hopkins for granted far too often. I live only 30 minutes from the Hospital, and was scared silly to have to go there; only the very sickest people go to Hopkins. However, as Dr. Cornblath has pointed out, anytime you have a rare disease or condition, your best choice of treatment will almost always be one of the major research hospitals.

There are a total of 10 medical institutions which have been approved so far for the Center of Excellence Program by the GBS-CIDP Foundation. Choosing one of them for your evaluation would probably save you a lot of time and headache. I hope this helps. If you would like more information, please feel free to PM me, but be aware that I check in only about once a week. My prayers are with you.