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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 3 hours ago | Replies (6019)

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@larry4343

Hi, I'm a new member. I'm 61.

My neuropathy journey:
My peripheral neuropathy was originally misdiagnosed as nerve entrapment caused by being overweight, and also as a podiatry concern (tight shoes), then lumbar radiculopathy. It is still undiagnosed. Most of the likely candidates have been at least tentatively ruled-out: I don't have diabetes, and it could have been alcohol related, or brought on by obstructive sleep apnea, but it's progressing too fast for those (especially since my apnea is treated and I stopped drinking). I've had a spinal MRI, an EMG/NCS test and a full neuropathy blood workup, as well as seeing a podiatrist. My neurologists are currently trying to get me admitted to speed up the testing cycle. Their current guess is either auto-immune or paraneoplastic syndrome, but they'll be looking at genetics, heavy metals, and other things as well.

At this point my feet are about 1/2 numb with pain and some muscle loss. My fingers are and hands are starting to go numb, I get tingling and numbness in my calves and thighs, and have some autonomic symptoms (difficulty swallowing being the most concerning), and a few other things. I had very few symptoms last spring - just intermittent big-toe numbness and some thigh pain while exercising. Now I notice new or worsening symptoms almost weekly. If you're new to neuropathy, I wouldn't let this worry you, my doctors tell me it's very rare for it to go south this quickly.

Other than that, I feel fine :).

Anyway, thank you all for sharing your stories and allowing me to share mine. Cheers.

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Replies to "Hi, I'm a new member. I'm 61. My neuropathy journey: My peripheral neuropathy was originally misdiagnosed..."

Welcome @larry4343, I'm so sorry to hear that you've joined our neuropathy club. It's good to see you are reaching out and learning as much as you can about your condition. I shared my story in the following discussion along with other members in the community and thought you might find the discussion helpful:
-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

You might also want to take a look at the following sites for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/.

You mentioned having new or worsening symptoms weekly. Have you looked into any possible treatments?