Hi there. I too think its great this forum is up. (I posted last night on the R.A and Crohn's disease thread.)

What I find so frustrating in all of this is the degree to which the neurology establishment has really shown a particular disinclination to the consideration of autoimmune roots until it's pushed in their face, condition by condition. By example, I know that in the case of my ailment - RSD/CRPS - even though there is solid peer review evidence linking it to elevated levels of a particularly nasty pro-immune cytokine, IL-6, I couldn't even get in to be seen by a neuro-immunologist when I went through the Mayo Clinic in Rochester MN this summer.

And I had only a little better luck a few weeks later at Johns Hopkins Bayview. Where the very kindly and senior clinical immunologist who did agree to see me said that in his view it was potentially “unethical” to even try a therapy one someone whose specific condition hadn’t yet been shown to be amenable to the therapy, in the absence of a double-blind placebo controlled trial. Otherwise any results would be just anecdotal. Then the very junior neurologist who had finally been handed my file got me the name of an outside lab that could test blood serum and CSF for IL-6 levels, and I was sent on my way, along with the admonition that sometimes it takes 15 to 20 years to get from research results to patient trieatment.

Has anyone here had the experience of running into that particular wall? This sense of come back in X years when we can help you?

Mike