I re- read your post this morning. My conditions for PN or RSD has not spred much so far, and for that I am grateful after hearing about how bad some of us get. I can tell you I am scared however. I am taking suppliments and thats about it. Some pain medication. Even if we agreed to give our doctors access to our cases, I am not sure there is anywhere in the country that is acvtivly trying to do something about this horrible CRPS. If there is, would you let me know? I would play guinee pig gladly, if I thought there was a chance that this could be resolved or cured. My doctors are worried for me. I have another two ganglion cysts on the ankle. The roots of it are going inside the joint of the ankle. I already had two removed and had the torn misdianosed tendon problems. They can't do the surgery because of the RSD or PN. They arn't making me go for the tests, as in either case surgery could make this worse.
Do you know anywhere, that real research is being conducted? Can you tell me what journals or articles you have read that might shed some light on this? I appreciate any information.
I am sorry you go through so much with this condition, and of course all the rest of us who are miserable with it.
I don't want to go back to a wheel chair, and just am wondering if there is anything more I can do for myself.
The suppliments seemed to help, especially B12 Shots. ginnie