1. < Neuropathy
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.

Mentor
John, Volunteer Mentor | @johnbishop | Jun 7, 2023
In reply to @rca "I'll reply to myself. ....." + (show)
@rca

I'll reply to myself. .....

Jump to this post

@rca, Do you have any senior citizen organizations or groups near you that might offer help with getting around or attending events? The dinner cruise sounds like fun.

REPLY
rca | @rca | Jun 7, 2023

No, the senior citizens group do not help with going to events!!

REPLY
DawnG | @imagine1 | Jun 7, 2023
In reply to @ray666 "Hi, Dawn. Welcome! I read your post with a bit of a smile as I just..." + (show)
@ray666

Hi, Dawn. Welcome! I read your post with a bit of a smile as I just got back from the supermarket, where I spent the past three-quarters of an hour pushing a cart up and down the aisles. Mine is an idiopathic neuropathy, and my neurologist, like yours, was at a loss to give advice. He also didn't seem too interested in puzzling out the cause. At first, that frustrated me. But he's a good guy and otherwise appears 100% committed to helping me. Our last meeting was a month ago. Since that time, I've been doing a lot of self-educating, trying to learn as much as I can about idiopathic neuropathies. (I realize that sounds self-defeating: idiopathic neuropathies wouldn't be called idiopathic if there was much to learn!). However, studying my condition has helped me put together a bunch of good questions to ask my neurologist (at least, I hope they're good questions). This morning I phoned him and made arrangements to meet in a few weeks' time for the two of us to go over my questions. Frankly, at the moment, I can't think of much else to do to keep my spirits up other than to pursue a cause, even if, once found, knowing the cause is of no help. If you've not yet visited their site, you might want to check out the Foundation for Peripheral Neuropathy; also (and maybe especially) the Foundation's YouTube site, where you'll find dozens of informative videos. Good luck to you! And again, welcome! ––Ray (@ray666)

Jump to this post

Hi, Ray. I hope you'll post your neurologist's answers to your good questions - that would be very helpful to read. I'm going to check out the YouTube videos. Thanks!
-Dawn

REPLY
1 reply
Ray Kemble | @ray666 | Jun 7, 2023

Hello, Dawn (@imagine1)

At the moment, I have such basic questions to ask my neurologist, such as: Is my PN a large or a small fiber PN? Is it progressive or stable? Since it's idiopathic, is there any point in trying to learn its cause? Those sorts of basic questions.

Then I also want to ask if I might benefit from working with either a physical therapist or personal trainer (not that I can afford hefty co-pays! LOL), a skilled practitioner who has had some real-life experience working with clients with PN. I've worked with many a well-meaning physical therapist in past years who, while well-meaning, had had no experience with people with PN.

So, my goal is twofold: (1) to get some good answers to my questions, and (2) to assure my neurologist I regard us as a team of two in managing my PN.

I'll keep you posted on how this goes.

Cheers!
Ray (@ray666)

REPLY
james19113 | @james19113 | Jun 7, 2023

t the moment, I have such basic questions to ask my neurologist, such as: Is my PN a large or a small fiber PN? Is it progressive or stable? Since it's idiopathic, is there any point in trying to learn its cause? Those sorts of basic questions.
actogames.com

Then I also want to ask if I might benefit from working with either a physical therapist or personal trainer (not that I can afford hefty co-pays! LOL), a skilled practitioner who has had some real-life experience working with clients with PN. I've worked with many a well-meaning physical therapist in past years who, while well-meaning, had had no experience with people with PN.

So, my goal is twofold: (1) to get some good answers to my questions, and (2) to assure my neurologist I regard us as a team of two in managing my PN.

I'll keep you posted on how this goes.

Cheers!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 7, 2023
In reply to @james19113 "t the moment, I have such basic questions to ask my neurologist, such as: Is my..." + (show)
@james19113

t the moment, I have such basic questions to ask my neurologist, such as: Is my PN a large or a small fiber PN? Is it progressive or stable? Since it's idiopathic, is there any point in trying to learn its cause? Those sorts of basic questions.
actogames.com

Then I also want to ask if I might benefit from working with either a physical therapist or personal trainer (not that I can afford hefty co-pays! LOL), a skilled practitioner who has had some real-life experience working with clients with PN. I've worked with many a well-meaning physical therapist in past years who, while well-meaning, had had no experience with people with PN.

So, my goal is twofold: (1) to get some good answers to my questions, and (2) to assure my neurologist I regard us as a team of two in managing my PN.

I'll keep you posted on how this goes.

Cheers!

Jump to this post

Welcome @james19113, It sounds like you may have a diagnosis similar to mine - idiopathic small fiber peripheral neuropathy. I went for a long time before seeking a diagnosis because I only had numbness which did progress some. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think it's great that you are making a list of questions you would like to have answered so that you can talk with your neurologist. This site has some good tips and cards you can print out to take with you for your questions - The Patient Revolution - Tools for the Healthcare Visit: https://www.patientrevolution.org/tools.

Treatment depends a lot upon your neuropathy symptoms. Are you able to share a little more about your symptoms?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 7, 2023
In reply to @bkfoster1 "What's PN? Barb" + (show)
@bkfoster1

What's PN?
Barb

Jump to this post

Hi Barb, PN is peripheral neuropathy

REPLY
bkfoster1 | @bkfoster1 | Jun 7, 2023

Thanks! Does that mean arms and legs?
Barb

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 8, 2023
In reply to @bkfoster1 "Thanks! Does that mean arms and legs? Barb" + (show)
@bkfoster1

Thanks! Does that mean arms and legs?
Barb

Jump to this post

Peripheral neuropathy can appear in both the arms and legs but from what I've read it usually starts in the feet/toes which was my experience. If you want to learn more about the different neuropathies, Matthew B. Jensen has a great YouTube Channel (https://www.youtube.com/c/MatthewBJensen) with lots of easier to understand videos including this one on how the different neuropathies are diagnosed - https://youtu.be/3FrQ7Glvgok.

REPLY
View MoreView Less
Please sign in or register to post a reply.