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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6026)
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@bouf1948

I’m new to the group as of today. I have poly neuropathy. I’ve had two EMG tests, and I’ve gotten a little worse. Sometimes (right now), the pain is so bad I can’t stand it, but the main thing bothering me is loss of balance. I can be walking across the room, or even standing, and I’ll fall down. I can’t hardly get up when I fall down, which is troubling. I use a cane, except in my home, because everything is level, and I hold on to walls, furniture, etc. It started about 12 years ago as tingling in my right foot, so I went to foot doctors. The foot doctors finally said it was coming from my back, so I went to back doctors. The back doctors said, no, it was my feet. I have cervical stenosis and degenerative disk disease and other back problems, but the neurosurgeon says the PN isn’t coming from my neck or back.has anyone had luck with surgery?

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Replies to "I’m new to the group as of today. I have poly neuropathy. I’ve had two EMG..."
John, Volunteer Mentor | @johnbishop | May 24, 2021

Hello @bouf1948, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have small fiber peripheral neuropathy and can understand the balance issues. I've become quite good using the senior shuffle when I first get up from sitting or start walking. So far I don't need a cane but I do use a walker when I have to get up in the middle of the night and use the bathroom.

You might find the following discussions helpful.
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Is your neurosurgeon recommending back surgery?

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ljarman | @ljarman | May 24, 2021

Like you I have stenosis and degeneration issues in my back, thoracic and lumbar. I started falling in early December and like you I just fall down, but I cannot get back up and have absolutely no strength in my legs once I fall. I have fallen enough times that although I use a walker in the house, if I go out I am now in a wheelchair.
Falling down is just bizarre because you have little warning. I have cut my hand and needed stitches but most often I just get bruised up. Once I fall, I often wonder how I got down to the floor because one minute I’m standing and the next on the floor. I struggle with pain as well and use THC gummies to sleep. When I read your post I thought OMG this person is going through the same issue. Thank you for sharing, made me feel not so alone.

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