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-   -   a long way to go to come back without any testing, my trip to Johns Hopkins (

fmichael 10-29-2006 08:13 PM

a long way to go to come back without any testing, my trip to Johns Hopkins
I flew to Baltimore from LA a couple of weeks ago in hopes of getting a complete pro-inflammatory cytokine workup at Johns Hopkins Bayview.

No luck, notwithstanding my neurologist letter of referral and a secondary referral from a rheumatologist at the Mayo Clinic. First, the folks in rheumatology who are actually working with the new anti-IL6 drugs wouldn’t see me, because I didn’t have an established rheumatological disorder. Then my file got passed to a very junior neurologist, who would have told me there was no point in coming, but the letter of referral to the allergist/clinical immunologist with whom I made the initial point of contact never made it to her. When I gave her a copy of the letter of referral from my neurologist in LA (which the folks in allergy had faxed to neurology weeks before) she told me that if she had seen the letter earlier, she would have told me not to come. She was able, however, after a couple of days to come up with the name however of one lab that's testing for high levels of Interluekin 6, a cytokine that's been found in significantly elevated amounts the CSF of CRPS/RSD patients and to be the single most probative indicators of death from cardiac artery disease. (References available upon request.)

It's like I showed up at least a year before they are actually testing clinical patients for pro-inflammatory cytokines, outside of tightly established research protocols for drugs the would counter RA and Crohn's Disease. I was however advised, by the very kindly and senior allergist/clinical immunologist who initially agreed to see me, that although me levels of IL-6 would almost surely be elevated, where I had a small heart attack a couple of years before - three years after getting RSD - that not only was there no assurance that just because a condition was associated with high levels of IL-6 there was no assurance that it could reverse the malady, but, and I had heard this warning earlier, there's a real risk with some of the drugs being associated with non-trivial infections, e.g. meningitis.

I'm not sure what all of this means to RSD patients, but I now know there are at least three medications in Phase III trials for the treatment of RA and Crohn's, on account of which one or more of then become generally available within maybe a years or so, assuming they survive scrutiny for side-effects.

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, even though there is now solid peer review evidence linking RSD/CRPS to elevated levels of a particularly nasty pro-inflammatory cytokine, IL-6, I couldn't even get in to be seen by a neuroimmunologist 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 Hopkins, where the kindly allergist 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.

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 . . . .


Abbie 10-30-2006 11:49 AM

I'm sorry you went all that way just to be told sorry... come back in X years. I'm sure that was very frustrating.

I too am running into these kind of walls. My docs are researching several things they believe might fight this monster but they can't get any help from the doctors that actually do what they are looking at. I hope that makes sense. Basically they are being told that the medicine or procedure isn't really for RSD so they won't help or they are telling my docs to check back later. But my doctors want to see if it would work as many indicators are there that it will.

Now I don't know exactly what they are looking at as my docs don't want me to get my hopes up only to have them shattered. My docs just give me the basics of what they are looking at... I think they do this because they know I will go and look up all I can on whatever and get my hopes up.

fmichael 10-30-2006 01:45 PM

p.s. re Johns Hopkins
In fairness, I have to say that I was offered a referral to Hopkins' Pain Management Dept., which routinely sees their RSD cases, in the event that I was not already under the treatment of an anesthesiologist for palliative care.

I declined because I already have a pain specialist who's an assoc. prof. of anesthesiology at U.S.C. and of whom I think the world.

That just wasn't the reason I was knocking on their door.

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