1. < Neuropathy
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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 3, 2023
In reply to @dig2dye2 "Yes I have and yes I got a second opinion. Both from neurologists. First neuro ordered..." + (show)
Profile picture for dig2dye2 @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/

REPLY
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Mentor
John, Volunteer Mentor | @johnbishop | Feb 3, 2023
In reply to @lindawishart "I have lumbar stenosis and am scheduled for MISS L-4, 5. on March. I have bilateral..." + (show)
Profile picture for lindawishart @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/

REPLY
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Mentor
John, Volunteer Mentor | @johnbishop | Feb 3, 2023
In reply to @michael149 "correct Ihav en opain b utsomelackofcoordin ation of mybodyan dpermanen tnumb nessinmyfeet-Itiscausedb ytaking haldolf or48yrsforse veretourettesyn..." + (show)
Profile picture for michael149 @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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Profile picture for michael149
michael149 | @michael149 | Feb 3, 2023

I-ha ve-tried-ever y-pr esc r t ion dr ug -f or-n europathy -I-do5-exerc ises-3t imesadayt augh t t omeb yaphysic alt h er apist

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jhumm | @jhumm | Feb 3, 2023
In reply to @mkyearout "My name is Michael and I agree. I've had idiopathic peripheral neuropathy for around 15 years..." + (show)
Profile picture for mkyearout @mkyearout

My name is Michael and I agree. I've had idiopathic peripheral neuropathy for around 15 years (I'm 73 now). It's mostly in my right foot. I'm pretty sure mine was caused by decreased blood flow to my lower legs. I also have atherosclerosis which has forced me to have stents and finally a quadruple bypass in 2018. A vascular surgeon has performed a couple of operations trying to open up some of the blockages in my arteries in my right leg with poor results. And I have Inflammatory Bowel Disease. Nice combination, huh?

Exercise helps. I try to do a mile every other day on my treadmill and some Pilates work other days. My Dr. has given me an Rx for a topical cream that my compounding pharmacy makes that helps. It has this long name: Gaba/Keta/Clon/Amit/Lido 10/10/0.2/2/5% Active. I usually rub it on in the morning and it lasts for a few hours. I also find a TENS machine helps a little - I use it almost every evening. And some devices that squeeze and release both my calves (I'm hoping that increases the blood flow).

Other than that, I feel fine!

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Though some of the details of our PN struggles may be different in essence we are all walking this very hilly road together.
It sounds like you have found some helpful aids to living a reasonably "normal" life. Onward we walk.

REPLY
1 reply
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mkyearout | @mkyearout | Feb 3, 2023
In reply to @jhumm "Though some of the details of our PN struggles may be different in essence we are..." + (show)
Profile picture for jhumm @jhumm

Though some of the details of our PN struggles may be different in essence we are all walking this very hilly road together.
It sounds like you have found some helpful aids to living a reasonably "normal" life. Onward we walk.

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Yes, we are all on the same path. I can only walk about half a block before I have to stop and let the blood flow catch up in my calves. But indoors I can do an entire mile on the treadmill at about 2 miles an hour. I guess the difference is the treadmill is flat while outside the terrain varies.

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jimsmith12 | @jimsmith12 | Feb 3, 2023

Hi My name is Jim. I am a lung cancer patient and still going through treatment after almost three years. I have peripheral neuropathy which makes the bottom of my feet numb. Sometimes my finger tips get numb but not often. I have tried acupuncture for three months which did not help much. I use analgesic cremes which help very little.Any advice or questions welcome. Best Jim

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lindawishart | @lindawishart | Feb 3, 2023
In reply to @johnbishop "Hi Linda, Welcome to Connect. The neuropathy symptoms can be treated but I don't believe I've..." + (show)
Profile picture for John, Volunteer Mentor @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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Thanks for your input, truly appreciate the info. Plan to go ahead with the decompression laminectomy and will report on results.

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cgs | @cgs | Feb 3, 2023
In reply to @romans8 "I just joined this conversation. I have been diagnosed with peripheral sensory neuropathy, small fiber neuropathy,..." + (show)
Profile picture for romans8 @romans8

I just joined this conversation. I have been diagnosed with peripheral sensory neuropathy, small fiber neuropathy, and pudendal neuralgia. I have pain every day. I am interested in learning how others are dealing with the chronic pain.

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Gabapentin helps me alot. Calgary neuropathy associatuon is a good resourse. Loma linda university offers a new technique..I called and would like to go,I am a caregiver for my wife at this time.I am 73 so I am of course apprehensive of my neuropathy
Diabetic and fighting to control and change foods and portions. Wanting to plan ahead before I reach the limit on med that my Dr has told me exists.
Praying very often I know God is in control.Jesus was no stranger to suffering.

REPLY
Profile picture for cgs
cgs | @cgs | Feb 3, 2023
In reply to @dig2dye2 "Yes I have and yes I got a second opinion. Both from neurologists. First neuro ordered..." + (show)
Profile picture for dig2dye2 @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..

Jump to this post

Call loma linda university I was offered a free conseltation I have not called yet.I have called Mayo,and clevland clinic for costs and services. Iam caregiver for my wife I am 73 she is 72 I am praying about guidance at this time.My doctor has increased gabapentin for second time in 4 -5 years. He has told me there is a limit on this med.

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