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Profile picture for Colleen Young, Connect Director
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.

Profile picture for rolyhu
rolyhu | @rolyhu | Feb 1 3:20am
In reply to @johnbishop "Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

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@johnbishop Hi, John. I have very often referred to idiopathic peripheral neuropathy a idiotic neuropathy! Glad to know I am in good company! Also, a question. What is "small fiber" and how is it diagnosed?

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rolyhu | @rolyhu | Feb 1 3:29am

I am not sure I am sending messages to John Bishop or replying to last comment I read, just sending my comments back to me? Sorry, I am completely illiterate when it comes to this!

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1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 1 7:46am
In reply to @rolyhu "@johnbishop Hi, John. I have very often referred to idiopathic peripheral neuropathy a idiotic neuropathy! Glad..." + (show)
Profile picture for rolyhu @rolyhu

@johnbishop Hi, John. I have very often referred to idiopathic peripheral neuropathy a idiotic neuropathy! Glad to know I am in good company! Also, a question. What is "small fiber" and how is it diagnosed?

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Hi @rolyhu, My neurologist ordered a nerve conduction test along with some labs and a physical exam. The Neuropathy Commons site has a good overview explanation of small fiber vs large fiber neuropathy along with how neuropathy is diagnosed:
- Overview - https://neuropathycommons.org/neuropathy/neuropathy-overview
- Diagnosing - https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 1 8:09am
In reply to @rolyhu "I am not sure I am sending messages to John Bishop or replying to last comment..." + (show)
Profile picture for rolyhu @rolyhu

I am not sure I am sending messages to John Bishop or replying to last comment I read, just sending my comments back to me? Sorry, I am completely illiterate when it comes to this!

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@rolyhu If you click the Reply button beneath a members post, you will see their member name show up first in the comment box where you type. The member name sends a notification to the member that someone has responded to their comment. You can also type in the Post Comment box at the bottom o a page and anyone following the discussion will be notified of your comment. Using the members name in your post insures that the member will receive a notification. You can find more information on how to use Connect in the Help Center here - https://connect.mayoclinic.org/help-center/ .

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 1 8:24am
In reply to @rolyhu "Hi. I was diagnosed with idiopathic peripheral neuropathy after falling down flight of stairs. I had..." + (show)
Profile picture for rolyhu @rolyhu

Hi. I was diagnosed with idiopathic peripheral neuropathy after falling down flight of stairs. I had never had any numbness in feet before that. After being diagnosed with pre-diabetes, my diagnosis was all of a sudden changed to diabetic neuropathy. My A1C has been 6.3 only 4 times in 13 years, remaining time at pre-diabetic or even normal values, without diabetic meds or diet. I just don't believe it is diabetic. Anyway, it has worsened over the years to the point now my feet are almost completely numb but still painful, some numbness up to knees. Beginning to have some difficulty driving, have many falls, trip over a string in the floor! Medications ate becoming more and more ineffective. I fear augmentation. Has anyone heard of that? Anyway, I am at my wits end.

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@rolyhu, Sorry to hear you have diabetic neuropathy. I also have been in the pre-diabetes category most of my adult life and only started making some lifestyle changes after being diagnosed with idiopathic small fiber peripheral neuropathy in 2016. I focused on losing some weight and eating healthier along with intermittent fasting and lowering the amount of carbs I eat. I shared my journey in another discussion here - https://connect.mayoclinic.org/comment/336050/. I do think the lifestyle changes have helped slow the progression some. What I learned about pre-diabetes that the doctors never mentioned to me is that it also puts you in the metabolic syndrome category which also is associated with neurological conditions and neuropathy. Here's some more information on the topic.
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

The Foundation for Peripheral Neuropathy has a lot of good information on Healthy Lifestyles - https://www.foundationforpn.org/lifestyles/.

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Profile picture for blowerk1216
blowerk1216 | @blowerk1216 | Feb 2 12:33pm

Can I ask everyone a question here had anyone tried a program of supplements including methylated B12, B1, Benfotiamine, S-form Alpha Lipoic Acid, Magnesium Glycinate and Acetyl L-Carnitine? I have done a lot of research into this BTW I did a PhD program in Molecular Biology so I have the background to assess this program. I welcome some comments.

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neurobob | @neurobob | Feb 2 1:02pm

Hello, everyone. Two questions from a new participant:
1. Anyone have experience with Abbott's ProclaimPlus FlexBurst360 spinal implant? I'm five months past surgery. Somewhat better, generally less-intensive pain, but neuropathic feet still deprive me of sleep. How long has it taken after implant for you to see improvement, if you in fact have?
2. They tell you to lay off wine. Love my red. Anyone gone dry and seen a real difference?
--NeuroBob from Texas.

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Profile picture for joanland
joanland | @joanland | Feb 4 12:23pm
In reply to @johnbishop "Hi @rolyhu, My neurologist ordered a nerve conduction test along with some labs and a physical..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @rolyhu, My neurologist ordered a nerve conduction test along with some labs and a physical exam. The Neuropathy Commons site has a good overview explanation of small fiber vs large fiber neuropathy along with how neuropathy is diagnosed:
- Overview - https://neuropathycommons.org/neuropathy/neuropathy-overview
- Diagnosing - https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy

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@johnbishop Thanks so much post the post to the neuropathycommons web site. I found a location in OR where a skin biopsy can be done. I'll ask if my neurologist can do the biopsies and have them sent to the location listed or if I have to go there personally; it's 4 hours away.
Again, thank you!

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Profile picture for highdesertdweller
highdesertdweller | @highdesertdweller | Feb 6 6:10am

Hi John/all,

The "block of ice"/stone feeling in my feet has recently gotten worse. Perhaps it's the colder weather. It makes my balance worse and more difficult to walk. Do you know anything that I'm eating that may make it worse like it is now, and anything that can somewhat remedy, take the edge off in terms of food or supplement? The pins and needles/burning is better for some reason, but now it's the extreme hardness. It's always something with this. Any help would be appreciated. Thanks! Caleb

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1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 6 7:46am
In reply to @highdesertdweller "Hi John/all, The "block of ice"/stone feeling in my feet has recently gotten worse. Perhaps it's..." + (show)
Profile picture for highdesertdweller @highdesertdweller

Hi John/all,

The "block of ice"/stone feeling in my feet has recently gotten worse. Perhaps it's the colder weather. It makes my balance worse and more difficult to walk. Do you know anything that I'm eating that may make it worse like it is now, and anything that can somewhat remedy, take the edge off in terms of food or supplement? The pins and needles/burning is better for some reason, but now it's the extreme hardness. It's always something with this. Any help would be appreciated. Thanks! Caleb

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Hi Caleb @highdesertdweller, I do think diet can help but may be only part of the answer. The cold weather definitely makes it harder for me to get around. I like my not so cushy shoes that have barefoot type zero drop soles for balance but in the winter my feet get colder so I will venture out in different normal type shoes with more of a cushion. Then I just have to be more careful with my balance. As far as food or supplements, you might find the following discussion helpful for suggestions:
-- Small Fiber Neuropathy: Is there a special diet I should be on?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-10/

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