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?

@johnbishop

Just read an interesting article in the Science Daily – Gluten-free diet may help people with neuropathic pain.

https://www.sciencedaily.com/releases/2018/02/180228160432.htm

John

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I will definitely check it out

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@johnbishop

Just read an interesting article in the Science Daily – Gluten-free diet may help people with neuropathic pain.

https://www.sciencedaily.com/releases/2018/02/180228160432.htm

John

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@tonyagann

I had nerve puncture biopsies that gave my neurologist more information about my neuropathy, and an audio evoke test to check the time it takes for a message to get from my ears to my brain and brain stem.

My tests have indicated both autonomic and small fiber peripheral neuropathy.

Have you been tested for MS?

Jim

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http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

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@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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http://www.walkjoy.com has a device which may help walking

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@gjnson

http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

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Hi @gjnson, the WalkJoy device sounds similar to the Walkasins device. We had a speaker who was part of the design team talk with our Minnesota Neuropathy Association in July of 2017. Here are my notes from the meeting:

“Walkasins Helped Me Walk Again” — Report from a patient with diabetic peripheral neuropathy

Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology is currently going through the regulatory process for medical devices under the FDA.

More information is available on their website: http://rxfunction.com/

John

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@gjnson

http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

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Thanks for the info. I shall look this up. Every little bit helps..

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@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,

In July 2017 I went to a meeting at the Minnesota Neuropathy Association where Dr. Lars Oddsson shared the story about a patient with diabetic peripheral neuropathy who was the first test case for Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology was going through the regulatory process for medical devices under the FDA but I think it's now in production. The story was amazing as the patient had not walked in almost a year and kept getting worse and worse. The special shoes gave him his life back.

More information is available on their website: http://rxfunction.com/.

John

Liked by steeldove

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Living with neuorlogical problem is hightly challenging. Today I coudln't walk as both my legs were painful which disturbed my routine work. I know very well that there is no medication for this. Poor blood circulation to legs & Ulnar neuropathy r the reasons.

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@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 John, This is exactly what i learn about – options for supplementing/ maintaining my abilities.  Have a good one. Bucky

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@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, good to learn there a folks working on these issues.

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@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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@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

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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@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:

John

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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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