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#18 | ||
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What tests have you had? My EMG/NCS showed large fiber neuropathy, the skin biopsy at Hopkins showed advanced SFN. I have visible muscle wastage. My pain is all over the place, but the worst of it feels like it comes from the long bones in my legs, and fom the stiffness in my feet, ankles, and legs. It is primarily a crushing, twisting feeling. I also have pinched nerves at wrists and elbows, slight, occasional clawing in my hands, and pain and stiffness along my hands on the pinky side. It has definitely gotten a lot worse in the past few years, despite my neurologist's insistence that it "isn't supposed to hurt this much or get worse this fast." For most of my life I was merely clumsy and uncoordinated, about five years ago it started to get much worse. If you have a good relationship with your PCP, I would start exploring pain medication options there. Many neuropathy patients with moderate to severe pain are on some combination of gabapentin, an anti-depressant, and an opiate. Experimenting with what you have is probably not advisable long term, but if you were to find that it helps...be careful how you present it to your doctor. You want it to seem like his idea. If the gabapentin was working, you may want to give it a longer trial. It is a very safe drug and sometimes the side effects pass after a while. |
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