I have only heard of one other person here that has this diagnosis, is it that rare? How did you find a good Dr.? I live near a big city, Fort Wayne, IN, and can't find much and when I call they won't tell me anything, like what aproaches they use. They all just say "you need to be evaluated first"! I can't afford to pay hundreds of dollars for the eval. to find out they don't give out narcotics, or they don't know much about the condition or how to diagnose it properly, or to just be sent to physical therapy again. I'm so frustrated!!
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