Remember that the Internet cannot replace a physician’s expertise and training….

From a press release from the AMA, Dec. 20, 2001.
So what the hell do you do when your physician doesn't know anything about your condition? You go to the experts, others with the same condition.
Ok, this is not medical advice, ask your doctor for who you should go to when they don't know.
http://www.e-patients.net/AMA_Dec2001.pdf