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@kenhassen

Hi All,

I’ve been previously diagnosed with severe neuropathy in hands, forearms, shoulders, abdomen, feet, legs and thighs, as well as my private parts, for many years. Symptoms arose during my late teens and progressed into early twenties, for no apparent reason, having taken no previous meds, no known (at the time) chemical or toxic exposures, no tobacco, no drugs, no alcohol, no diabetes. A real mystery, which began as painfully, sore feet, about a year before military discharge. Ever hear of a U.S. Fleet Marine (US Navy Field Medic stationed with US Marine Corps) who didn’t complain of painful feet? Pain for the most part eventually disappeared, leaving near total numbness in its’ place in all of the above mentioned body parts.
Years later, I discover that my neurological problems could only have started because of my being stationed at the US Marine Corp base during 1967 in Camp Lejeune, NC, attributable to water contaminated with Benzene, Trichlorethelene and other solvents in amounts over 400 times thought acceptable by FDA.
The Veterans Administration has eventually acknowledged service connection, thanks to the recent passage of the PACT Act, but aside from getting the answer to a lifelong mystery, I’m almost sorry that although the VA has responded favorably in accepting service connection, along with their assurance of continuing care, I feel that after fifty years, at this point in my life, recalling all of the sports and social limitations I’ve lived through, I might have been better off not knowing the origins. Today, I really do not suffer from much pain, just the severe numbness. I’ve always been under the care of neurologists, but at this point, I only take Gabapentin; 300mg/day and Alpha-Lipoic Acid; 600mg/day. My biggest problems are that when walking, It feels as though I have thick, spongy carpeting under my feet, unsteady, constantly tripping over my own feet & falling. Also, I’m never without my thermometer when showering, since I’m occasionally burned by fluctuations in water temperature when showering.

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Replies to "Hi All, I’ve been previously diagnosed with severe neuropathy in hands, forearms, shoulders, abdomen, feet, legs..."

Hi @kenhassen, Welcome to Connect. I only have the numbness in my legs and feet but not to extent that you do. I too have been dealing with it since my 40s but only got a diagnosis in my 70s since I had always been told it's probably nerve damage and there is nothing that can be done about the numbness. I was bummed out when I finally sought a diagnosis and it turned out to be idiopathic small fiber peripheral neuropathy and again I was told they didn't have any treatments to help with the numbness which was what brought me to Connect. I wanted to learn what others have shared. I'm happy you have found Connect as I know you are not alone with your experience.

It sounds like you don't have any pain or the gabapentin is controlling the pain. I was given gabapentin by my primary care doc before being diagnosed but stopped taking it after a couple of weeks because it wasn't helping the numbness at all. I talked with my PCP who met with her Mayo team and after meeting with them and answering a few questions about pain, they confirmed it won't do anything for numbness.

There are a couple of sites you might find helpful for learning more about neuropathy if you haven't already seen them.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

I've tried many different shoes to try and help with that spongy feeling when walking. The best I've tried are the shoes with zero drop soles which are similar to walking barefoot but your foot is protected by thin flat rubber soles. There are a lot of different brands but the ones I tried were Xero shoes. I switch between the zero drop soles and more normal shoes that are comfortable if I know I have to walk very far.

Have you used any walking aids like trekking or hiking poles for more stability?