My PM doctor wants me to see a rheumatologist to have a full autoimmune panel done...after 30 nerve blocks, spinal cord stimulator implant and 3 years of pain and agony he now thinks I may not have RSD/CRPS. Needless to say, I am a little confused. I have ALL the symptoms of CRPS except I have no problem with material touching my affected arm and hand. (?)
If anyone has any input, I would love and appreciated hearing it!!!!!
Thanks
Lisa

I would find it very strange if after all this time you suddenly don't have RSD. BUT...it is common for people with RSD to ALSO have other autoimmune problems. It could be that if you are also suffering from another autoimmune disease that you need to be treated for that in addition to the RSD. I know from personal experience that when you have something else going on that is undiagnosed in addition to the RSD that it can make everything so much worse (causing addition pain and flares, etc). It's definitely worth checking out. I wouldn't dismiss the RSD diagnosis though until and unless they find something else that has been causing all of your RSD symptoms. Like I said...it is common to have other autoimmune diseases and ALSO have RSD.

Thanks for your reply...good information
I have rheum appt in June...first available appt. in the meantime I am just laying low, only doing what is absolutely necessary and so thankful that I have good insurance and a supportive husband. My son will be home from college this week for the summer so my husband will have his gym buddy back and that takes a little pressure off me to entertain him,lol!
Hope you have a good week
Lisa

After many years of undiagnosed/misdiagnosed CRPS, I found a physician who actually knew what this disease was and definitively diagnosed me in 2009. I'm in Stage 3 and not only is pain management difficult, but from personal experience, I have developed other autoimmune conditions which don't make for a very pleasant scenario.

From CRPS, came Sjogren's Disease, Raynaud's Disease, and Trigeminal Neuralgia (many MDs do not believe TN is related to CRPS, but I totally disagree). Each of these diseases comes with it's own set of unique physical symptoms/impairments/pain.

I'm sure you've had tests to rule out the following, but just in case:
Lupus
MS
Lyme's Disease

Please post when you get some answers and I pray God leads you to the correct doctor/facility where a definitive diagnosis can be rubber-stamped on your file!

God Bless!
Sherry

how long have they run with the dx of RSD???? I mean thats huge.. are they saying its not RSD because the treatments aren't working??? none have really worked with me either.. I agree with every one that you shldnt disregard the dx of RSD. but find out if anything else is going on.. it could be multiple issues, I've spoken with a lot of RSD sufferers who have gained other dx,s through time.. especially auto immune dxs... good luck to you

i was just diagnoised with full body rsd yet spinal taps in 2008 show elevated protein levels which only regular testing was done. I am concerned for my health as I can not move about or be comfortable at all. Can u suggest a super neurologist? Waiting for ketamine but many other strange symptoms last five years?