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Member
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Join Date: May 2007
Location: Spokane Valley, Wa
Posts: 473
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Member
Join Date: May 2007
Location: Spokane Valley, Wa
Posts: 473
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Thanks, everyone! I really appreciate the responses, they were very helpful.
I also got out all my old med records and went through them again. It's all the paperwork from court, including records.... not sure why I've kept them all these years, lol... but it was very insightful to reread them.
It turns out that I DID have the sores and discolorations, way back at end of year one. Not as bad as I see in your pics, however. But when I had the Guanethidine blocks for that gov't trial, they went away and never came back. I don't know how they handle those blocks now, but for the trial I had over 30 of them done! I didn't realize just how many had been done... I only knew it was a LOT, lol. They helped so much I wouldn't have cared if I had to have them twice a week for the rest of my life. Have any of you had them done? Where they remove all the blood from your leg and fill it instead with the meds? The tourniquet was painful, of course... but well worth it in the end. I was heartbroken when the study was over.... and back in a r.o.m. boot within 2 months. (I wore that danged thing for seven years!)
IHH... I only had the blueish cold foot (only in the right leg at first, spread took quite a few years... could that also be credited to the Guanethedine?), never the red angry swollen ones I see in all the pics. That's why I was asking all this in the first place. Michael was beginning to question my dx, after seeing all the pics. I got freaked out by that, I admit it. I found myself wandering around the net searching for other possibilities, none of which fit the bill. M has always been my biggest supporter, and to have HIM question what was going on was a mind-blower.
After doing all the research I could, I am left knowing my dx was right on target after all. There is just a difference between hot/cold rsd, rsd I and II, and between types and longevity of treatments. If the Dr.s don't fully understand rsd, why would I think I could?!? But it does look like being a "Guanethedine guinea pig" was a very good thing to be, lol. I can't imagine what would be going on if I hadn't been! 
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05-25-2007, 07:00 AM
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