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Hopeless and Discouraged, again! Seeking any advice.

Neuropathy | Last Active: May 23, 2023 | Replies (55)

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@mjpm2406

I was diagnosed with chronic Sensorimotor Axonal Polyneuropathy three years ago at Weill Cornell. My three daughters and I were invited to undergo a Whole Exome Sequencing test because we have a family history of PN going back five (or more) generations. The neurologist at Cornell gave us EMG and needle EMGs and that’s how I was diagnosed with the Sensorimotor Axonal Polyneuropathy. The genetic test came back and I have CMT2 and CMT4B. Daughter 1 has no CMT mutations. Daughter 2 has the CMT2 mutation. Daughter 3 has both the CMT2 and CMT4B mutations. No cure for these suckers. My feet and fingers tingle all day and I have reduced sensation in my toes, feet and fingers. Still driving but I know my driving days will end sooner than later. I tried Gabapentin and Lyrica but turns out I had bad reactions to those pain meds. Good luck.

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Replies to "I was diagnosed with chronic Sensorimotor Axonal Polyneuropathy three years ago at Weill Cornell. My three..."

Sounds like you are on the same path. How do you make it through the pain day to day. I has just gotten to be too much for me.

Have you tried compression gloves. I have Raynaud's disease, the blood just suddenly stops flowing to the ends of my fingers when I get cold. They are painful, and I can actually get Frost Bite if my hands are not warmed immediately. Compression gloves have been wornderful. I also make little hand warmers out of fabric for the pocket and rice for the filler. Put the packet in the microwave for about a minute, put it in your coat or jacket pocket and then your ands. Warm and toasty in minutes. Hope this may give you some help
Gina5009