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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hi Rick @rickhood, Welcome to Connect. Your symptoms sound pretty much like the situation I was in 20+ years ago. I had the numbness that started in the toes of both feet and gradually worked it's way up into my legs before I decided to get a diagnosis which was disappointing to say the least when I was diagnosed with idiopathic small fiber peripheral neuropathy. I shared my neuropathy story and what has helped me in another discussion here - Member Neuropathy Journey Stories: What's Yours?-- https://connect.mayoclinic.org/comment/310341/

As far as getting a diagnosis, my own personal feeling is the getting the diagnosis is just the beginning of your journey. Unless you have nerve damage or compression that can be corrected by surgery or therapy of some sort there is no cure for neuropathy. You can find treatments and therapies to manage the symptoms and provide relief for any associated pain but that's kind of a downer for all of us when we start our journey and are looking for that one magic pill or treatment that will fix us and make us normal again. I would recommend learning as much as you can about your condition and what questions to ask when discussing treatments with your doctor.

Here are a few good sources for learning about neuropathy:
-- Peripheral Neuropathy Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
-- Foundation for Peripheral Neuropady: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you been seen by a neurologist or had any tests like an electromyography (EMG), nerve conduction velocity (NCV) test, or a skin punch biopsy?

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Replies to "Hi Rick @rickhood, Welcome to Connect. Your symptoms sound pretty much like the situation I was..."

Thank you for the response John.
A neurologist did tests in November 2019 -- I believe EMG. No smoking gun with the EMG test. Diagnosis was idiopathic polyneuropathy, possibly caused by pre-diabetes. A second neurologist, who I only saw via Zoom, said the even slightly elevated blood sugar could cause neuropathy, but that it was unusual that it did not start in the toes. Mine did not start in the toes, it started in the entire front part of the feet all at once (arches forward) and it remains mainly in the front foot. Massage helps it a lot -- I have a massage gun that helps but only temporary.
A chiropractor I went to thinks my back is the issue, but a specialist I went to see does not see anything of major concern in the MRI of my lower back nor in the Xray of my feet. The chiropractor thought cortisone shot in the back might help but the specialist thought that was unlikely, although that is still a possibility, I see him again in 4 months.