You had better luck at Johns Hopkins than I did in 2006. Through a rheumatologist at the Mayo Clinic who had seen me and considered my dad a personal friend, he referred me to a collegue at Hopkins who was doing some really advanced work on inflamatory cytokines. Unfortunately because RSD/CRPS was not a defined rheumatalogical condition, he couldn't see me, so he passed the file on to a gentleman whom I understood was one of the top RSD nuerosurgeons in the world. He too took a pass (possibly the fact that I had sustained bilateral injuries deep in my feet had something to do with it) and sent it over to the head of the neurology dept., who passed it down the line. By the time I showed up from LA for the appointment, it was with a junior "Instructor in Neurology," who specialized in treating MS. When she rhetorically asked "what is it I'm supposed to do with you," I suggested she call the neurosurgeon who had sent the my file to neurology, to which she replied "what makes you think he would return my call."

As it was the only thing she could do was offer a referral to the folks that specialized in palliative care, but reviewing my history and med list, we both agreed that I was already receiving appropriate care in that dept. The end.

ps - Although they aren't that good with CRPS (especially if you are not living in the immediate vacinity of Rochester MN so that you can be followed up on a regular basis) the business of "what makes you think he would return my call" would NEVER happen at the Mayo Clinic.