Fight MPN
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Burning on Big Toe...anybody else?

So, for three or four years I suffered greatly with a burning pain on my big toes. Mostly one or the other, centering on a spot just about the size of a dime, on the top, right behind the toenail. Like somebody pouring acid on it, or touching it with a white-hot poker. Unbearable. Can't touch that spot. Pain on the scale of 8-10. Unbearable! Twisting my body, and throwing my legs around, and making noise...sounds like, "Ahhh, uuuhg, owwww!" Four, or five, or six hours almost every night. Neurontin, Hydrocodone, Predisone, Temazapam, and still no relief. Finally alcohol. Glass of wine, a beer, and I can sleep maybe from 4-5am 'til 7. I begged seven different doctors, and the the cancer, nerve, and pain clinics at Stanford for help. I fantasized about having it amputated. By a surgeon, or a hatchet, or a bullet. But they found a pinched nerve in my spine, and then my MPN disease was diagnosed. Cutting it off wouldn't have stopped the pain. But perhaps it was a symptom of my high platelet count. It's been a year now on 1000 mg of HU. No more attacks during that time. And no more abulance trips to the hospital for ischemic colitis. Some surgeries. And now on Hydrea .'1000mg/day and no more symptoms Keeping my fingers crossed?. It was the ET?p

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My first symptom of ET was burning, hurting small toe on my right foot. Physicians checked me for PAD, diabetes, gout, etc. which were all negative. I was prescribed various medications for nerve pain, muscle relaxants, etc. which did not help at all. During this time of several months, doctors were also keeping a check on my rising platelet count. Finally, my PCP at the time sent me to a hematologist who had treated ET previously in NY and diagnosed me immediately with ET. During our first office visit, he asked about burning, red painful toes!!! What a shock to learn that those were sometimes a 'symptom' of ET. After I started on hydrea, those symptoms went away. Someone also told me about tonic water for cramps in the foot and I started having a small glass each evening, sometimes with gin but mostly without. LOL. So, either lowering the platelet count helped my toes or the tonic water did it. I developed a 'taste' for tonic water and still drink it daily after these three years. I find that, if I don't have the tonic water for a few days, my toes will begin to 'burn' again!! Hope this helps!!


Wilmington NC


It is called erythromelagia and is a symptom of ET. Usually a baby aspirin a day keeps it away.

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