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Vicc · 09-01-2007, 03:50 AM

Hi Steff,

I just had a major conscience attack earlier, and threw away a long reply that totally hijacked your thread. I'm a notorious hijacker.

I honestly can't think of a responsible reply. Saying anything beyond "I dunno" could be seen as giving medical advice, but that hasn't stopped any of us here; ever. All I can say is that you would be a real exception to the rule if your warm, red skin is RSD; 16 months is just too long.

These phrases aren't that common in the US yet, but there has been a trend in Europe toward talking about "warm" and "cold" stages of RSD. If this trend crosses to the US, it's going to lead to a lot more questions but no more answers. But the bottom line is that all of us have "cold" RSD.

If you aren't cold and truly do have RSD, I don't know what to say, except that "cold" is almost as common as "pain" and as "cyanosis" in diagnosing this disease. If you have all three, you most likely have RSD; the few symptoms, the lower the odds. After 16 months, just about all of us had cold (usually cyanotic) RSD.

But I write about what my research showed me is the most likely cause of RSD, and I didn't focus at all on diagnostic criteria: ever. It's possible someone wrote a case study of an RSD patient and reported symptoms of fever, or of a leg that burns and is totally paralyzed, etc, etc, but just about everybody agrees that people get better in the first few months (some say a year), and this corresponds exactly with the time when warm RSD goes cold. If your leg is still warm and red, I don't think it's RSD.

I have to tell you that those abstracts had my ******** detector clawing my back. I may be able to post some of my reasons for this, but I may not, so I will just say for now that I once had a friend who was a "real carnie" from the 1950s; when carnie was sort of semi-respectable, and my friend could cut right through the medspeak and show me the trick. I would check that stuff out on PubMed before buying into it.

All I can do is toss in the idea of a vascular surgeon, but only because I know how important blood flow is in RSD. If blood flow causes RSD symptoms, it could cause other symptoms. I don't know. My neurosurgeon refers to my recovery plans (for my back) as "clutching at straws".

I suppose that when all you've got left to clutch at is straws, you keep grabbing and hope you can find a way to make "straw-aid" taste good. (I'm not known for mixing metaphors, but I'm only human).

So I have to close as I began: I'm not a diagnostician. I am, however, fairly observant and have a pretty good memory. both are helpful in affirming my impressions over the years about the "really important stuff". I didn't learn that cyanosis was so common until I began meeting other people on the Internet. I never found the word in the RSD literature, but it somehow made me feel good to learn that my purple feet didn't mean anything truly awful. It's just RSD.

So now you know my bias and are better able to judge whether my advice is well-intentioned but wrong; or if I might have actually figured it out. I hope that somehow, this helped...Vic