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.

robertjr | @robertjr | Feb 25, 2018
In reply to @robertjr "found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had..." + (show)
@robertjr

found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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Hi John,yes the neuropathy was in my bad foot..Was tested for neuropathy before bad break in ankle,wasgoing to see neurologist about my foot but have to wait right now...Trouble is even after ankle gets better still have neuropathy in foot plus ostioperosis...Alsowonder if this might happen again.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 25, 2018
In reply to @robertjr "found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had..." + (show)
@robertjr

found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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Hi Robert, I'm not sure anyone can answer if it might happen again. Has your doctor suggested any specific treatments or physical therapy to help you?

John

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robertjr | @robertjr | Feb 26, 2018

John,right now foot doctor just removed stitches from surgery,still have plate and screws in.soon might get a boot ,since they dont deal with neuropathy so will make appointment with neurologist soon as foot well enough to check out..right now foot doc said no weighton foot..would you think tne screws and plate will affect whatdoctor can find out..Neuropathy was in middle of foot so must be one of reasons ankle shattered..

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 26, 2018
In reply to @fonda "i would like to post to this group. I was on at one time but somehow..." + (show)
@fonda

i would like to post to this group. I was on at one time but somehow not getting the postings anymore. @annhoov would be my sign in... Thanks for your help. @annhoov

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Hi @fonda, according to your profile you should still be receiving email notices when new messages are posted to this discussion. To receive all notifications about the Neuropathy group, please follow the group. Learn how to follow groups and set your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/

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wobblyone | @wobblyone | Mar 12, 2018

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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9 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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Hello @wobblyone, welcome to Mayo Connect. I'm glad you found us. This is a great place to ask questions and learn what others with similar health problems are doing for treatments.

Are you doing anything for treatments for your neuropathy?

I have small fiber peripheral neuropathy in both feet and legs and I have balance issues so I'm extra careful especially in the winter time. I've mastered the senior shuffle when it's icy out. Also, first thing in the morning I'm pretty careful until I've done some testing of the feet. I too have had muscle atrophy and loss of strength. I'm trying to use exercise with small weights to help the arm strength. I ride a recumbent exercise bike in the mornings first thing when I get up to help with the leg strength. I've heard others use water aerobics because it's easier on the joints. Physical therapy might be worth while to learn specific exercises to help with balance.

As to your question on what you might expect -- I don't think it's the same for everyone as there are too many variables. You definitely have the right attitude to stay active and find activities that help and that you like. The Foundation for Peripheral Neuropathy has some good suggestions on their site:

Maintaining Balance:
-- https://www.foundationforpn.org/2017/08/04/maintaining-balance/

Maintaining a Healthy Lifestyle: (exercises and more...)
-- https://www.foundationforpn.org/living-well/lifestyle/

Hoping some of our other neuropathy members will join in and offer some suggestions for you.

John

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venki | @venki | Mar 12, 2018

Hello Have U taken MRI.? That only will show the blood circulation and small vessel problems. Take MRI Brain & Spine. Also take blood test with connected all tests.

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1 reply
steeldove | @steeldove | Mar 12, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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wobblyone, take a look at Maine Adaptive Sports & Recreation maineadaptive.org

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tonyalgann | @tonyagann | Mar 12, 2018

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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5 replies
ujeeniack | @ujeeniack | Mar 12, 2018
In reply to @tonyagann "I have ICD and l can't l that test. Is a CT scan of the brain..." + (show)
@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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REDO YOUR MESSAGE;IT IS UNCLEAR TO ME! TALK TO YOUR NEUROLOGISTS.

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