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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Jul 3 1:56am | Replies (6026)Comment receiving replies
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I am hoping to get some useful suggestions for my peripheral neuropathy. I will describe it and its history. I request that you relate to my case rather than yours and that you share the source of your knowledge. Thank you for your time.
I have no pain or tingling, just a quasi-numbness similar to what you might feel if an arm or leg “went to sleep.”
In 2016 I had an left ankle fracture treated by surgery, and a second surgery to clear up an infection from the first, (and remove the hardware). I began noticing some stiffness around the ankle and nearby leg. Gabapentin did not help.
About 3 months after the fracture, one night I reached my left are far above my head to get something. For about 30 seconds my entire left arm was numb. This quickly dissipated, but some numbness (I always mean quasi-numbness when I say numbness.) in the 3rd and 4th finger tips stayed. I am a classical pianist so that obviously concerns me. A tad of numbness began in the other left finger tips, though much less. The numbness in the 3rd and 4th tips has moved partly down the fingers, though also much weaker. My piano playing has not at all been affected by any of the above (except for some recent ankle/foot discomfort after much pedaling).
I saw a top neurologist at Weill-Cornell, a hand specialist, and others who all said it would heal and not to go for complex tests. To date no doctor has ever mentioned or suggested a neurological disease.
Later on the ball of my left foot began to feel puffy. Many months later, with no cause, the ball of my right foot began to feel puffy. As of now the left lower leg has stiffness on the sides and the right lower leg also to about half way up. The bottom of both feet feels harder just above the puffiness. I can walk several miles.
In 2019 I had an Emg at Weill Cornell. Nothing of consequence beyond peripheral neuropathy.
In 2020 I saw the hear of NYU Langone neurology and we did and Emg and nerve conduction study test which showed only some slow nerve conduction in one or two places. I also had and MRI cervical spine wo contrast neuro. All tests nothing of consequence beyond peripheral neuropathy. I tried about 6 peripheral neuropathy medicines over time (nortriptyline, pregabalin, carbamazepine, oxcarbamzepine amtriptyline) all with no effect. Earlier I tried several weeks of acupuncture and several weeks of physical therapy with no effect. I have been using 80 – 110 mg daily of broad spectrum hemp CBD since the beginning of 2022 and have added 1 -2 mg of THC for the last months to help with an entourage effect. No improvement. Based on a dispensary pharmacist’s recommendation my next step will likely be 50% CBG with 50% CBD and minimal THC.
I realize how very fortunate I am compared to many others. I thank you for your interest and wish you good health.