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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)Comment receiving replies
@jeffrapp
Hi there Jeff,
I’ve had Neuropathy about 42 years. It’s believed to have been caused by long term seizure medication usage.
My theory is that the Neuropathy improved after my lousy eating habits got better. I totally avoided any foods that had any semblance of nutrition associated with them. I use to eat my meals at the bakery. I was a nutrition nightmare. The way I ate I had to have Vitamin deficiencies which has a direct link to Neuropathy.
I’m sorry to hear you had cancer. I can’t imagine how frightening hearing that diagnosis would be. I have read a lot about cancer and anti-cancer treatments as causes of Neuropathy. According to the Lymphoma and
Leukemia Society 10-20
percent of people with cancer develops Neuropathy.
Were you experiencing any type of neuropathic symptoms prior to your Cancer diagnosis?
I have never had a skin biopsy, probably because my nerve conduction study and EMG showed plenty of evidence of nerve damage. Am I correct in assuming Small Fiber Neuropathy doesn’t show up during EMG & Nerve Conduction studies?
I’m clumsy, do you have that problem? I have trouble walking straight too. When I walk down the street I veer out in the street or on a lawn. I don’t know if it’s Neuropathy related or if I’m just naturally uncoordinated. I’m afraid it’s probably the latter. I never used any type of topical products for pain or burning. I used Fentanyl for pain which helped some.
I hope your symptoms improve,
Health & happiness,
Jake
Replies to "@jeffrapp Hi there Jeff, I’ve had Neuropathy about 42 years. It’s believed to have been caused..."
Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff
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@jakedduck1 There's a whole constellation of symptoms that can be attributed to neuropathy. The things you mention could quite possibly have neuropathy involvement. I have a list of things that could have neuropathy involvement, but the doctors can't say for sure.
I suppose that the menu my wife produces is slowing down my progress. She enjoys cooking, and we (almost) always have well balanced meals. Her mother taught her well.
Jim