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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.

wobblyone | @wobblyone | Mar 16, 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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Thanks steeldove, this is very helpful as i learn about options and alternatives and the future. Bucky

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wobblyone | @wobblyone | Mar 16, 2018
In reply to @venki "Hello Have U taken MRI.? That only will show the blood circulation and small vessel problems...." + (show)
@venki

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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Thanks venki, i will put this on my question list for my next checkin with my doctor. Bucky

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wobblyone | @wobblyone | Mar 16, 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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Hey thanks, i am not sure what small fiber neuropathy is, but i will look into it.  Certainly it shares many problems i am expdriencing. Glad to hear you are staying active, as i hope to be doing for a long time.  Thx too for the referral to  the foundationforPN. Bucky

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 16, 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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Hi @wobblyone -- Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
-- https://youtu.be/8nrv7lRvvwU

John

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venki | @venki | Mar 18, 2018

Today I took head bath and after that I used hair drier. In the evening I had severe headache which still continues. My question is whether the heater will make any changes in the brain and spoil the inner parts as I am having CSVD & Atrophy. Anybody pl.clarify.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 18, 2018
In reply to @venki "Today I took head bath and after that I used hair drier. In the evening I..." + (show)
@venki

Today I took head bath and after that I used hair drier. In the evening I had severe headache which still continues. My question is whether the heater will make any changes in the brain and spoil the inner parts as I am having CSVD & Atrophy. Anybody pl.clarify.

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@venki I am really sorry to hear your headaches are continuing. I don't know how a hair drier would affect the inner parts of the brain but hot is hot and a hair drier can put out a lot of heat. I'm guessing if it's too close it can burn the scalp. Have you talked to your doctor about it? Most of the time when I use a hair drier (I don't have that much hair!) it's on the cool setting as you don't necessarily need the heat to dry the hair.

John

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danybegood1 | @danybegood1 | Mar 18, 2018

@johnbishop , Hi John. Haven't posted in a long time. Nothing for me has changed yet, I feel like I'm just a broken record. Anyway, years ago I had terrible migraines, the throwing up, light sensitive, tunnel vision, aura kind. The only thing that helped was very hot heating pads, with pillow on top of my head. To this day, cold on my head is very painful to me. I have since stopped the migraines mostly by cutting down on caffeine and maybe it was hormone related. I was finally prescribed Imitrex and fioricet which was also extremely helpful. My ex also bought me a "cornbag" that you can heat in the microwave. It eventually burned up in the microwave. Wish I had another one. Maybe, all my problems now stem from a cooked brain. lol

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 18, 2018
In reply to @danybegood1 "@johnbishop , Hi John. Haven't posted in a long time. Nothing for me has changed yet,..." + (show)
@danybegood1

@johnbishop , Hi John. Haven't posted in a long time. Nothing for me has changed yet, I feel like I'm just a broken record. Anyway, years ago I had terrible migraines, the throwing up, light sensitive, tunnel vision, aura kind. The only thing that helped was very hot heating pads, with pillow on top of my head. To this day, cold on my head is very painful to me. I have since stopped the migraines mostly by cutting down on caffeine and maybe it was hormone related. I was finally prescribed Imitrex and fioricet which was also extremely helpful. My ex also bought me a "cornbag" that you can heat in the microwave. It eventually burned up in the microwave. Wish I had another one. Maybe, all my problems now stem from a cooked brain. lol

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Hi Dany (@danybegood1), it's good to hear from you. I used to have one of those microwave cornbags that I used for my feet which are always cold. I now crank up the electric blanket an hour before I go to bed and also wear socks. I found some ankle socks with bamboo fibers in them that are really soft and very stretchy so are easy to slip on and off. I always end up turning off the blanket shortly after getting into bed though.

Hope you have a pain free evening . ~ John

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 28, 2018

Hello members of the Neuropathy group. I think it's safe to say that everyone sharing in this group has been greeted by @johnbishop. He seems to always be online to offer information, give support, connect you with others, and to share a laugh of two. Ever wonder what makes John tick and what he does when he's not on Connect? Now you can.

Check out the Member Spotlights and read the latest story about John.
- Searching for Answers With Others: Meet @johnbishop https://connect.mayoclinic.org/newsfeed-post/searching-for-answers-with-others-meet-johnbishop/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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ann192790 | @ann192790 | Apr 28, 2018

I don't have diabetes but the nerve test definitely showed neuropathy in my feet. I have been on gabapentin for years and it seems to help some. It bothers the most when I first go to bed at night so my doctor added nortriptyline. For severe back pain I have been on Oxycodone 1/2 tab. every 3 hours during the day for many years. I usually use thermal paks when I go to bed -- sometimes they seem to help -- sometimes I push them off. Any suggestions?

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