Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

Hi Linda, Welcome to Connect. The neuropathy symptoms can be treated but I don't believe I've read of a cure in reliable information. I have read that it may be possible to reverse diabetic neuropathy but there are a lot of unknowns involved. Also, my own personal opinion is that if the neuropathy is caused by nerve compression and that can be fixed to relieve the symptoms that might be considered a cure by some. The best chance we have is to learn as much as we can about our condition and what treatments are available that might help. Here are my two favorite sites for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you been diagnosed with neuropathy? Can you share a little more about your symptoms and any treatments you've tried?

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I have lumbar stenosis and am scheduled for MISS L-4, 5. on March. I have bilateral peripheral neuropathy toes and balls of feet, I would really appreciate any info, on relief by other means, don’t know if surgery will help. I have neurogenic claudication bilateral hips.

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@cgs

Have you checked with loma linda University? Or any other neuropathy clinic? I have not for my neuropathy I am on intermediate dose gabapentin.

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Hi, i have been taking Lyrica and also now being taking Gabapentin. It helped with pain but i have issue with balance, can't walk without support. Hope you feel better.

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I had a traumatic fall in July of 2022. I tripped and landed on my right knee. The rest of my body including my face went straight into the concrete. I shattered my patella and required surgery. Lost a tooth and lots if scapes and bruises.

Here I am seven months later and I have bilateral neuropathy symptoms up to my knees.

Tests for SFN and LFN both came back negative. Neurologists have been unable to identify the reason.

Can trauma cause this type of reaction?

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I have a hard time balancing. Walking is hard. Neuropathy attacks my digestion so it’s hard to eat. I’m not diabetic. I do have a few immune diseases. I’m doing acupuncture and have massage’s when I can.

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@dig2dye2

I had a traumatic fall in July of 2022. I tripped and landed on my right knee. The rest of my body including my face went straight into the concrete. I shattered my patella and required surgery. Lost a tooth and lots if scapes and bruises.

Here I am seven months later and I have bilateral neuropathy symptoms up to my knees.

Tests for SFN and LFN both came back negative. Neurologists have been unable to identify the reason.

Can trauma cause this type of reaction?

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Welcome @dig2dye2 - I'm not a doctor and have no medical training but I'm pretty sure the answer to can trauma cause neuropathy that you are experiencing is a big yes. Here's an article on the topic that is fairly recent:
-- Diagnosis and treatment of the most common neuropathies following knee injuries and reconstructive surgery – A narrative review: https://www.sciencedirect.com/science/article/pii/S2405844021021356.

Since you mentioned that the rest of your body besides the right knee went into the concrete might explain nerve compression or damage causing bilateral neuropathy symptoms. Have you thought about seeking a second opinion or help from a teaching hospital or major health facility?

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@johnbishop

Welcome @dig2dye2 - I'm not a doctor and have no medical training but I'm pretty sure the answer to can trauma cause neuropathy that you are experiencing is a big yes. Here's an article on the topic that is fairly recent:
-- Diagnosis and treatment of the most common neuropathies following knee injuries and reconstructive surgery – A narrative review: https://www.sciencedirect.com/science/article/pii/S2405844021021356.

Since you mentioned that the rest of your body besides the right knee went into the concrete might explain nerve compression or damage causing bilateral neuropathy symptoms. Have you thought about seeking a second opinion or help from a teaching hospital or major health facility?

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Yes I have and yes I got a second opinion. Both from neurologists.

First neuro ordered tests. All were negative. She also ordered two MRI’s.

The cervical and lumbar MRI’s both showed degenerative changes. First and second neuro both agreed that did not give me a neuropathy.

However, I saw on the report a bulging disc and mild formalin narrowing in the L4-5 region.

Initially, I thought the bulging disc could be doing this. Neuro disagreed.

Second ordered a third and fourth MRI: brain and thoracic.

Those are pending.

I don’t know who I should go see, if anyone since no one seems to have a clue..

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@jagtejchawla03

Hi, i have been taking Lyrica and also now being taking Gabapentin. It helped with pain but i have issue with balance, can't walk without support. Hope you feel better.

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My Dr said the two cannot be taken together! You meant you stopped lyrica and switched, to Gabopentin, correct?

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@dig2dye2

Yes I have and yes I got a second opinion. Both from neurologists.

First neuro ordered tests. All were negative. She also ordered two MRI’s.

The cervical and lumbar MRI’s both showed degenerative changes. First and second neuro both agreed that did not give me a neuropathy.

However, I saw on the report a bulging disc and mild formalin narrowing in the L4-5 region.

Initially, I thought the bulging disc could be doing this. Neuro disagreed.

Second ordered a third and fourth MRI: brain and thoracic.

Those are pending.

I don’t know who I should go see, if anyone since no one seems to have a clue..

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@jenniferhunter started a discussion on Myofascial Release Therapy (MFR) for treating compression and pain here that might be helpful: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@lindawishart

I have lumbar stenosis and am scheduled for MISS L-4, 5. on March. I have bilateral peripheral neuropathy toes and balls of feet, I would really appreciate any info, on relief by other means, don’t know if surgery will help. I have neurogenic claudication bilateral hips.

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I'm wondering if Myofascial Release Therapy (MFR) for treating compression and pain might help -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@michael149

correct Ihav en opain b utsomelackofcoordin ation of mybodyan dpermanen tnumb nessinmyfeet-Itiscausedb ytaking haldolf or48yrsforse veretourettesyn drome-Iha v etriedev erydrug for neuropathyaccordin g tommyneurologist

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Have you tried any complementary or alternative treatments for neuropathy?
-- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

You might want to discuss some of these treatments with your neurologist or doctor to see if one may help.

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