BTW, if Birnbaum recommends you should get treatment....usually if he writes a letter for you....you can raise a stink with insurance. It is Hopkins afterall.

I guess what I am saying is, is he states you have SjS, even if you have doubts, you should have the criteria for some kind of immunosuppressive treatment. I think that docs are somewhat fearful of instituting immunosupressive treatment until you are half dead, due to the problems that it entails. They don't want to damage some one and have it not be inflammatory, have it due to something else.

Also have you tried Lyrica or Cymbalta or some of the other stuff for neuropathic pain? It may help.