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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?
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Yes I would like to hear about neuropathy as well please
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1 Reaction@annchen2026 I haven’t heard yet Ms. I’m new here so maybe I have to wait or go to another page?
Hi @annchen2026, welcome to Connect. I wasn't sure what information you are looking for when you mentioned "I haven't heard yet Ms." I'm wondering if you were looking for the same information that @jerademan asked when I replied to his post here - https://connect.mayoclinic.org/comment/1661714/.
Have you been diagnosed with neuropathy? Are you having trouble driving because of your feet?
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1 Reaction@jerademan Hi Jerry - I haven't driven in years but my Vietnamese daughter who sadly has dealt with the after effects of polio all of her 57 years and uses braces and crutches to get around, has used hand controls for years and years. She now drives for Lyft which I have to admit completely amazes me. But none of her passengers know or don't care so this is a note of encouragement. I dont know what kind of car she drives but I can find out if it would be helpful. She has never allowed her paralyzed legs to slow her down = she has been a great example for me - especially as neuropathy tends to slow me down. dorothy slater
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3 Reactions@revdorth Hi Dorothy, thank you for this amazing srory about your daughter who hasn't allowed her polio to overtake her life and has been driving using her hands only and is now a driver for Lyft! I love this encouraging story and am sure you are a very proud Mother. I am 73 years old and have just loved driving my entire adult life. This neuropathy diagnosis for me has really brought my mental thoughts overtake my daily lfe, but now am very encouraged that I'll be able to drive again. My current issue is that I need to find a vhicle that can accomidate my 6'6" body in comfort without fatiging too quickly. I am now learning how to drive at an instructional center for neuro-related illnesses who are helping me, but I need to soon buy a vehicle and have an outside Mobility installation company povide the necessary equipment to drive using my hands only. Being as tall as I am, mosy, if not all, SUVs aren't capable of providing space for my legs after installing equipment. Therefore I am needing to have my wife take me around from dealer to dealer to sit in the driver seat and determine leg space. If there are any other people in my situation who have already gone through this, I'd love to hear your findings.
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2 ReactionsMy name is John Poore I am a veteran and was exposed to agent orange and was diagnosed with peripheral neuropathy what can I do besides take pills
Hello John @jpooreprecious15, welcome to Connect. Sorry to hear you have neuropathy caused by exposure to agent orange. You are not alone. We have other members who also have shared they have neuropathy from agent orange. Here's a search that links to the member posts - https://connect.mayoclinic.org/search/comments/.
Here are a few reference websites that have helped me learn more about neuropathy and how I can live better with it:
-- Foundation for Peripheral Neuropathy - Living Well: https://www.foundationforpn.org/living-well/
-- Western Neuropathy Association - Patient Toolkit:
https://www.pnhelp.org/patient-toolkit-0
What's the most difficult symptom for you to manage?
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2 Reactions@jpooreprecious15 try 600 mg of alpha lipoic acid - brand name Source Naturals at nature store. Helped all of my pain 90% - once a day plus a good B-complex vitamin B - we lose B12 as we get old - I am 82 and your body will pee out what it doesn't need. Try it - nothing to lose - is very safe to take.
Md just put me on Gabapentin 100mg pre bed time seems to help
@johnbishop Hi John - I an a lifelong hypochondriac -at 7 i read a Readers's Digest article about the symptoms of leprosy and swore I had it - I didnt. I had breast cancer 25 years ago and now evidently at 89 my nerves are starting to die off leaving me with neuropathy. . Even though I learned at least a little bit about a lot of diseases over the years, I honestly knew nothing about neuropathy and how severe and paralyzing it can be. I am lucky that my case is manageable so far unlike the many who report here of what they are going through. I also did not know how little doctors know about neuropathy and as the population the world over is reaching their 90s and even 100s , I hope that medical schools begin to take it seriously. I am so glad this site exists. It is a port in the storm for many of us. Dorothy Slater
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