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Looking to connect with people who have non-diabetic neuropathy

Neuropathy | Last Active: 6 days ago | Replies (1096)
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@binh

I'm 78 and have had peripheral neuropathy in my lower extremities for over 25 years. It's getting worse as noted in my latest EMGs. However, it's now in my upper extremities along with vestibulopathy (balance issues).
As a disabled Navy veteran, the VA says I have polyneuropathy as a result of toxic exposure (Agent Orange) from my military service in Vietnam.
I'm currently seeing a pain management doctor outside of VA. I am doing pt and taking a regimen of 1800mg of Gabapentin (initially prescribed for migraines) and 500 mg of Tyenol, as needed. I started out with Tramadol, but stopped that due to side effects of more headaches. The pt is helping with my balance, but not the chronic pain. I stay as active as I can can which helps diminish my feet and leg pain.
Open for suggestions, but right now just dealing with it.

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Replies to "I'm 78 and have had peripheral neuropathy in my lower extremities for over 25 years. It's..."
jamessaxo | @jamessaxo | Apr 5 4:16pm

Binh, seems most of your bodies nerves have lost their protecting insulation,MYELIN.
Myelin needs vitamin B12 . Alcohol reduces B12 absorption. Look up METHYLCOBALAMIN.

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3740 | @3740 | Apr 6 11:25am

Tylenol … I have about 6-9 oz glass of wine with my meal every night. Is that bad? I have Neuropathy in my Hands & Feet.

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pbettend | @pbettend | Apr 6 12:46pm

I am 63 and have had a MGUS caused by an M protein elevation which causes raised immune system activity because it is tricked into thinking something needs to be destroyed (diagnosed about 15 years ago). The result is progressive destruction of Myelin sheath and nerve due to the immune system attack. I have feet numbness some leg issues and minor numbness in both arms and hands.

I still have strength and balance. My diet is predominantly healthy. Alcohol and sugar cause inflammation which temporarily elevates the side effects.

My neuropathy is incurable so I manage my health and exercise to give me the best quality of life I can achieve.

I am exploring Rituximab and previously was in a trial for Calquence.

Anyone with neuropathy needs a solid partnership with a neurologist and a hemotologist for a treatment plan IMO.

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