Thanks daylilly.

My pain management doctor did his fellowship at Beth Israel. They are doing some of the cutting edge research on CRPS. In addition to his training he is very interested in treating CRPS patients. My pm doc also refers his CRPS patients to Dr. S in Philly for a second look. My Neuro is very young but also well trained in CRPS. I know he is not the only neuro in his practice to treat CRPS because one of my husband's colleagues with CRPS is being treated by a partner in the practice.

My primary care physician first learned of CRPS 10 years ago when his PA was diagnosed. That is how he is up to speed. I was diagnosed by a physician who was the director of our local Hospital emergency room. He was extremely knowledgable and set me on the right path.

That is not to say I didn't have to kiss a lot of toads until I found my Princes. Believe me I kissed my share. The biggest toad was from the world renowned Blaustein Pain Treatment Center at John's Hopkins Hospital. I became real good real quick at interviewing and rejecting doctors, PT's and Neuros. I visited many before I was satisfied with the team I have now.

Of the four colleagues we know of three have been evaluated by Dr. S in Philly and all three were awarded disability, on first try. The fourth was in a wheelchair and had severe dystonia for over a year but now is in partial remission, out of the wheelchair and is working full time now as a teacher.

I live in a very small town. Before CRPS I could have danced across it. Just after I was diagnosed our vet told me of a woman in town who had CRPS for over ten years. I knocked on her door and introduced myself to her. I was so happy to find someone who could provide me with first hand experience. I will never forget her words to me as I left her home. "CRPS won't kill you but you will eventually wish that it would." She has since passed away but her words very much set the tone for my approach to confronting my CRPS.

I truly do not believe that our disease is as rare as once thought.

I certainly hope that your experience with SSDI, my experience and the experiences of those my husband and I know of will become more common for folks with CRPS. I pray it does!!!!!!!!!!!!

A very closes intensely private friend, who was the reason I went to Hopkins in the first place, is in remission for the second time. While at the library one day a woman with a purple leg was softly crying and was having muscle spasms and attempting to stretch her leg out while a library employee was suggesting that she was disrupting the library and blocking the isle. I suggested to the employee that if she was not acquainted with the ADA perhaps her continued actions would cause an introduction to the ADA that she would not like. This woman, who was obviously in pain thanked me and shared that she had a rare pain condition called RSD. She was so relieved when I told her she need not preach to the choir. We have since become good friends but she has recently moved to Reston Virginia where she has only interviewed toads. If anyone knows of a good CRPS doc in that area would you please post it on that CRPS doc thread?