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.

onamission | @onamission | Jan 2, 2021
In reply to @takjack "Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed..." + (show)
@takjack

Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.

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takjack, Poems Syndrome seems to have a thiamine deficiency component. Thiamine requires magnesium to become bioactive. Fat soluble thiamine such as Benfotiamine passes through the brain/blood barrier more efficiently than water soluble forms. Please review these links:
https://pubmed.ncbi.nlm.nih.gov/22504253/
https://www.jstage.jst.go.jp/article/internalmedicine1992/34/7/34_7_674/_pdf
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html

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onamission | @onamission | Jan 2, 2021
In reply to @sevenwoods "Have chronic coat hanger pain (among others). Nothing seems to help." + (show)
@sevenwoods

Have chronic coat hanger pain (among others). Nothing seems to help.

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sevenwoods, chronic coat hanger pain is a type of dysautonomia that may result from a thiamine deficiency.. Thiamine is intimantly involved with the autonomic system and the vagus nerve. Thiamine requires magnesium to become bioactive. Please use these links as a starting point
http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html

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Hank | @jesfactsmon | Jan 3, 2021
In reply to @takjack "Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed..." + (show)
@takjack

Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.

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@takjack
Ted, I am sorry that your wife has what sounds like a terribly debilitating illness. Just curious, what sorts of things has Cheryl done and is she doing now to deal with or cope with her neuropathic pain? Also, does she have severe fatigue, and has that progressed? Just looking to compare notes. The pain and fatigue experienced by my wife, who got PN in 2014 from chemo, have progressed dramatically in the last 2 years. Best, Hank

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jervisp | @jervisp | Jan 4, 2021
In reply to @sallymagint "Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy..." + (show)
@sallymagint

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 4, 2021
In reply to @jervisp "Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in..." + (show)
@jervisp

Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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Hello Patricia @jervisp, Welcome to Connect. There are several discussions you may want to read and learn what other members have shared, including a discussion on neuropathy and brain neuroplasticity started by Barry @user_che214927 who is also from Australia.

- Neuropathy and Brain Neuroplasticity that you may want to read here: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Peripheral Neuropathy - Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

Patricia are you able to share your biggest challenge or fear of losing your independence?

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Barry Sheales | @user_che214927 | Jan 4, 2021
In reply to @jervisp "Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in..." + (show)
@jervisp

Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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Hi Sally, let me try and undestroy your life, as I am currently achieving.

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sunnyflower | @sunnyflower | Jan 10, 2021

Hey Barry haven't seen you in forever! Hi @jervisp (Sally), I am Sunnyflower. Barry, after you undestroy Sally's life can I be next in line? Warmest wishes to both of you. Sunnyflower 🙏😊

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1 reply
Hank | @jesfactsmon | Jan 10, 2021
In reply to @sunnyflower "Hey Barry haven't seen you in forever! Hi @jervisp (Sally), I am Sunnyflower. Barry, after you..." + (show)
@sunnyflower

Hey Barry haven't seen you in forever! Hi @jervisp (Sally), I am Sunnyflower. Barry, after you undestroy Sally's life can I be next in line? Warmest wishes to both of you. Sunnyflower 🙏😊

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@sunnyflower
Hi Sunny, haven't seen you either! Also, I think Barry is going to be busy. I've noticed there are a lot of lives that need "undestroying" lately. Nice to see your sunny face, Hank 🌹🌹😍

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rmoran1966 | @rmoran1966 | Feb 3, 2021

i have mild Neuropathy in my legs and feet. i am not diabetic and my doctor does not have a cause for it. question: the bottoms of my feet are ok during the day but when i go to bed there get very hot and cause me not to sleep well. any idea why this happens at night more than daytime.

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2 replies
wisfloj | @wisfloj | Feb 3, 2021

Sounds like me, always worse when I get off my feet and want to watch TV or go to sleep. From all my research it is typical, unfortunately

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