Thanks Daniella,
I found that I needed to go to a large research-oriented medical facility in order to get a diagnosis. The docs there seem to have seen more unusual conditions and are more interested in looking into conditions for carefully. The neurologist I started with did all the right tests, but didn't know how to interpret the results, even when they were grossly abnormal. Anti-MAG neuropathy is very slowly progressive, so sometimes treatment isn't recommended, because of the side effects and expenses. I do keep an eye on research that is being done. Rituxan has been studied for anti-MAG neuropathy, but still isn't covered by insurance. Just need to wait.
No, I don't have fibromyalgia or diabetes. I'm sorry that you have so much pain. That must be quite difficult, especially without a diagnosis.
I hope that you can find the right doctor to diagnose your condition appropriately. Keep looking!
NancyKay
Quote:
Originally Posted by daniella
Hi welcome to the board. I have pn and it is similar to rsd and hard for me to be on my legs. I have severe lower leg pain though. I also have something similar to fibromyalga and was wondering if you had that too?I am clueless on dx but have to so many docs and the fatigue popped out to me. You said your neuro has not dealt with your issue is their someone you could find that has more experience?Have you been tested for diabetes?Well welcome to our family.
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