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Profile picture for Colleen Young, Connect Director
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 tony24
tony24 | @tony24 | Jan 30, 2023
In reply to @dbeshears1 "This neuropathy affects us all so differently, and some have accompanying spine issues, others like me..." + (show)
Profile picture for Debbie @dbeshears1

This neuropathy affects us all so differently, and some have accompanying spine issues, others like me do not. My idiopathic PN slapped me very quickly; one day my legs felt weak, then 10 days later I was in a wheelchair, with minimal hand function as well. I lived in the wheelchair for 6 months, before aggressive PT helped me build muscle strength and regain balance. I use my walker when out, but today can walk unassisted short distances and even drive. I still have bad neuropathy and take Gabapentin to help make it tolerable, but hands down, I got better from where I started, not worse, and have been at this plateau for a few years.Like many others here, what I’m trying to do is maintain strength and energy to do anything we might be able to control to maintain our current state and not get worse. Think positive, and borrow from the tips from this group to see what you might be able to do to help stop the slide!

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Hi Debbie you're story is inspiring. I hope you the best. I'm dealing with increased muscle weakness in my arms and body and It's very hard to come to terms with. I hope I can regain strength like you did some day. I have to get out my head because it's negative and super sad. I guess making myself think positive should be a daily practice. Anyways take care.

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Beach | @michhino | Jan 30, 2023
In reply to @tony24 "Hi I'm sorry you're going through that. you seem to have acceptance which is good. Every..." + (show)
Profile picture for tony24 @tony24

Hi I'm sorry you're going through that. you seem to have acceptance which is good. Every try accupuncture? Or how about going on you tube and typing in binarual beats for PN and listen it seems to help people. Anyways I have it all over my body form drinking too much. I'm sober but my body is messed up. I'm dealing more with limitation and weakness. Try the binaural beats on you tube. Good Vibes and Ninad music help me a little. Hang in there. Tony

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Thank you, Tony.

I have tried many types of medications prescribed by doctors. They do not seem to work and I do not know why I take them. I also bought massagers for hands, legs and feet to ease the pain a bit. This is the closes cure that I have for a little comfort when at home but for others I suffer as usual.

I will research binaural beats and I do have doubts for an ultimate cure.

Again, thank you.

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berniep | @berniep | Jan 31, 2023
In reply to @donnagautreaux "Thank you for your reply. My B-12 (as far as I know), has not been checked...." + (show)
Profile picture for donnagautreaux @donnagautreaux

Thank you for your reply. My B-12 (as far as I know), has not been checked. But my neurologist is running numerous blood tests. I understand you getting tired of seeing doctors….. I’ve been doing the same thing. I went through all the heart testing last week with my cardiologist, and have been to numerous other doctors and testing as well. I’m exhausted, but I will fight this… whatever is causing these symptoms. Thank you got your support and understanding!

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Also, very important to check B-6 levels since a higher than normal level can result in B-6 toxicity resulting in neuropathy. Many doctors are unaware of this thinking that since B-6 is water soluble, that the excess will be eliminated naturally.

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2620 | @2620 | Jan 31, 2023

Thank you oi am having quite a bit of pain in my legs feet and ankles. Terrible muscle spams and i dont sleep at all. Trying to find a great neurologist. Want to be tested and this is getting to me emitionally. I live in tulsa

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1953 | @hopeful1953 | Jan 31, 2023

The cold Chicago weather can effect my fingers and my feet equally. My fingers tingle less in warmer temperatures.
Wearing kid gloves all four seasons keep my hands warm when I shop at the market.
Unfortunately, the grasp in my hands can cause me to drop things especially table utensils. Being aware of my situation, I focus more the grasp of items.
It can be very frustrating to experience this condition.
I’m glad the MAYO Clinic Forum covers many conditions. We learn so much from each other.

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edraff | @edraff | Jan 31, 2023
In reply to @tony24 "I was wondering if anyone has learned a way or a treatment to regain strength from..." + (show)
Profile picture for tony24 @tony24

I was wondering if anyone has learned a way or a treatment to regain strength from nerve damage from neuropathy? When I google it, it seems pretty bleak but I still want to have some hope. Is there any supplements that could improve muscle strength? etc....

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for me personally, my Dr prescribed PT & I do many exercises to keep up strength & dexterity in my arms & legs & feet & hands I'm not sure they help in the short term, but hope they slow down progression & keep me able to function (somewhat) normally. At the very least it gives me a small sense of control over this nasty disorder. ...also as an aside I'm 64 & need to gain muscle & it's slow even w/ PT 3x a week so I'm trying DAA, D-Aspartic Acid, natural & no neg side effects, only on week two, hopeing to see results by week 8-12. Ed

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2 replies
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tony24 | @tony24 | Jan 31, 2023
In reply to @edraff "for me personally, my Dr prescribed PT & I do many exercises to keep up strength..." + (show)
Profile picture for edraff @edraff

for me personally, my Dr prescribed PT & I do many exercises to keep up strength & dexterity in my arms & legs & feet & hands I'm not sure they help in the short term, but hope they slow down progression & keep me able to function (somewhat) normally. At the very least it gives me a small sense of control over this nasty disorder. ...also as an aside I'm 64 & need to gain muscle & it's slow even w/ PT 3x a week so I'm trying DAA, D-Aspartic Acid, natural & no neg side effects, only on week two, hopeing to see results by week 8-12. Ed

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Thanks for your reply. I hope to be able to do some exercises in the future. Even if it doesn't do much for me physically I think mentally it could help. I would imagine your exercises are helping you with a lot of things. Keep going. I hope the best for you.

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colonial1 | @colonial1 | Feb 1, 2023
In reply to @vsunshine "Thank you, Colleen. I was diagnosed with PN a couple years ago at Mayo Clinic and..." + (show)
Profile picture for vsunshine @vsunshine

Thank you, Colleen. I was diagnosed with PN a couple years ago at Mayo Clinic and it has become more severe. I feel fortunate to only have to deal with it at night, when I have severe leg and foot cramps that continually interrupt my sleep. For the past week, I have been going to a chiropractor, who has completely eliminated the cramps with spinal adjustments, Tens treatments and the nightly application of a roll-on solution called Muscle Pain. It has done wonders for my sleep and attitude. I am a very active 115 lb. 77 year young female and am not ready to sit down. I know the condition will progressively get worse, but want to be prepared for what to do by reading this site to see what others are doing. Thank you for taking the time to help your community.

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Thank you everyone. Wishing us all improvement. The following thought is not new but more prominent in my mind. This Peripheral Neuropathy is susceptible to our emotions more than I ever imagined. I’m actively pursuing that realization. Keep you posted.

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crossette | @crossette | Feb 1, 2023
In reply to @edraff "for me personally, my Dr prescribed PT & I do many exercises to keep up strength..." + (show)
Profile picture for edraff @edraff

for me personally, my Dr prescribed PT & I do many exercises to keep up strength & dexterity in my arms & legs & feet & hands I'm not sure they help in the short term, but hope they slow down progression & keep me able to function (somewhat) normally. At the very least it gives me a small sense of control over this nasty disorder. ...also as an aside I'm 64 & need to gain muscle & it's slow even w/ PT 3x a week so I'm trying DAA, D-Aspartic Acid, natural & no neg side effects, only on week two, hopeing to see results by week 8-12. Ed

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My doc recomended using Creatine to build muscle strength. It comes as a powder and you mix about 5 grams into water or milk. I also take whey protein powder mixed in too. Take this right before exercicing. There are many studies that show this works to build muscle and I did notice it working for me. Suggested dosages are on the container. These powders are often used by body builders.

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ellenshe | @ellenshe | Feb 1, 2023

I have neuropathy on the bottom of my feet, and in my calves and also in my left palm. I have no pain, only numbness which causes problems with balance. This coupled with essential tremors and orthostatic tremors adds to the balance issue. I currently need a walker to walk outside but can sometimes walk (gingerly!) at home without an aid.
Every doctor I have seen says that neuropathy is "incurable" Has anyone found anything to deal with this problem?
Ms Tess

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