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?

There was no help with pain while using the cannabis nor afterwards. The pharmacist had other regimens I could have tried….various combinations of the key cannabis parts—-and also forms of it to use—-but I opted out at that point. She was most helpful with suggesting new medicines for treating the nausea and constipation also. However at that point after nine meds and acupuncture I was ready to stop and live with my pain. I now have a power chair and am able to be around more in my senior housing complex. i am ninety years old and doctors felt that could have had affect on side problems.

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Many of you have met @artscaping here on Connect. Today, @artscaping was featured in Connect Member Spotlights. Member Spotlights feature interviews with fellow Connect members so you can learn more about members you’ve connected with and some you haven’t met yet. Read all the spotlights https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/.

Here’s @artscaping's: Finding energy and purpose by giving back: meet @artscaping, https://mayocl.in/2AVIJlb

Check out @artscaping's story and let her know and others what it has meant for you to have these connections on Connect.

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Thank you @lisalucier, I am guided by the support I have received from all of the mentors. I am inspired by the sharing and caring efforts of every member. What an amazing community!

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@fonda

There was no help with pain while using the cannabis nor afterwards. The pharmacist had other regimens I could have tried….various combinations of the key cannabis parts—-and also forms of it to use—-but I opted out at that point. She was most helpful with suggesting new medicines for treating the nausea and constipation also. However at that point after nine meds and acupuncture I was ready to stop and live with my pain. I now have a power chair and am able to be around more in my senior housing complex. i am ninety years old and doctors felt that could have had affect on side problems.

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@fonda , thank you for sharing your experience with Cannabis. I’ve tried the oil but didn’t help me ether, wishing you a pain free day dear !♥️

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I tried the cannabis "CBD Oil" and got no relief. Peggy

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@johnbishop

That makes 2 of us that didn’t know what a laminectomy is…here’s a good overview:
http://www.mayoclinic.org/tests-procedures/laminectomy/basics/definition/prc-20009521
John

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When I am standing still, my feet becomes greyish and reddish and In PAIN. When I start walking or put up my feet in upright position, I feel better, the REDDISH AND greyish disappear. I have this problem for 2 years..Having HOT BODY, ESPECIALLY MY BACK.

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@dannydomingo, Me, too. There are some online explanations…..I think it just comes with the SFN territory. Sometimes my hands also become reddish/purple. I also notice very white areas at the bottom of my toes and even fingers. There are quite a few possible diagnoses on the Internet. It depends on temperature/what you are doing when the color change happens and what you do that normalizes it. Try dancing….maybe that would help. Kind of joking but it might be worth a try. Some sources do say to see a physician quickly, especially when you also have wounds that don’t heal. Be safe and well. Chris

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@dannydomingo

When I am standing still, my feet becomes greyish and reddish and In PAIN. When I start walking or put up my feet in upright position, I feel better, the REDDISH AND greyish disappear. I have this problem for 2 years..Having HOT BODY, ESPECIALLY MY BACK.

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Hi @dannydomingo, I would like welcome you to Connect along with @artscaping and other members here on Connect. Here is one of the easiest to understand explanations of small fiber peripheral neuropathy I've seen. It's by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Have you found anything that helps you feel better?

John

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@johnbishop

Hi @dannydomingo, I would like welcome you to Connect along with @artscaping and other members here on Connect. Here is one of the easiest to understand explanations of small fiber peripheral neuropathy I've seen. It's by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Have you found anything that helps you feel better?

John

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Thanks for the video. I wonder how this applies to large bundle neuropathy.

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@johnhans

Thanks for the video. I wonder how this applies to large bundle neuropathy.

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He has a lot of other YouTube videos on Neurology that may address that. I haven't watched them all yet.

Matthew B. Jensen series of short videos — Introduction to Neurology: Level 1
https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

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@johnbishop

He has a lot of other YouTube videos on Neurology that may address that. I haven't watched them all yet.

Matthew B. Jensen series of short videos — Introduction to Neurology: Level 1
https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

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Look for them thank you for that information. I was off of here for a month and a half because my computer went out and now I've got a smartphone so I am back.

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I was diagnosed with PN about six years ago–slight tingling of the feet. Cause was alcohol consumption which I believe was an easy diagnosis. Have had several EMP's and MRI's over the years showing a continuing deterioration of the nerves in my legs. No pain but loss of balance and strength. PT has helped a bit but have seen a greater loss in feeling this last year. Have been looking into HBOT therapy, PRP and stem cell therapy but neither are covered by medicare and clinics I have talked to offer treatments but at a huge cost. Has anyone had any success with these or other therapies and if so where? The lack of mobility has curtailed my ability to do much these days. I am 77 yrs. Any info would be appreciated.

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@johnnyb

I was diagnosed with PN about six years ago–slight tingling of the feet. Cause was alcohol consumption which I believe was an easy diagnosis. Have had several EMP's and MRI's over the years showing a continuing deterioration of the nerves in my legs. No pain but loss of balance and strength. PT has helped a bit but have seen a greater loss in feeling this last year. Have been looking into HBOT therapy, PRP and stem cell therapy but neither are covered by medicare and clinics I have talked to offer treatments but at a huge cost. Has anyone had any success with these or other therapies and if so where? The lack of mobility has curtailed my ability to do much these days. I am 77 yrs. Any info would be appreciated.

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Hello @johnnyb, welcome to Connect. I was diagnosed with idiopathic small fiber PN 2 years ago but I've actually had it for well over 20 years. I just didn't pursue it because they told me up front that if it is nerve damage they can't do anything to fix it. I only have the numbness with my PN. I don't know much about HBOT therapy for PN but there is other information about the therapy on Mayo Clinic's website here:

https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

I have no medical training or background and as much hope as I think stem cell therapy holds for neuropathy I have found no evidence of successfully treating PN with stem cell therapy. There are also no clinical trials for stem cell therapy for treating neuropathy as far as I know. We had a guest speaker on stem cell treatment at the Minnesota Neuropathy Association this past August who discussed it in details. I attached my notes from the meeting along with some links to references the speaker made.

There are a lot of people making money off of those of us with neuropathy looking for the magic cure. Here are some of the sites I use when trying to verify whether something is not a scam.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I take supplements which helps me but it is by no means a cure. You can read my story in an earlier post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Here are some member posts on Low Level Laser Therapy:

@swiss
https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

@johnnyb are you able to do any exercise that helps with your mobility?

John

Shared files

18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)

Liked by barbarn

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@johnbishop

Hello @johnnyb, welcome to Connect. I was diagnosed with idiopathic small fiber PN 2 years ago but I've actually had it for well over 20 years. I just didn't pursue it because they told me up front that if it is nerve damage they can't do anything to fix it. I only have the numbness with my PN. I don't know much about HBOT therapy for PN but there is other information about the therapy on Mayo Clinic's website here:

https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

I have no medical training or background and as much hope as I think stem cell therapy holds for neuropathy I have found no evidence of successfully treating PN with stem cell therapy. There are also no clinical trials for stem cell therapy for treating neuropathy as far as I know. We had a guest speaker on stem cell treatment at the Minnesota Neuropathy Association this past August who discussed it in details. I attached my notes from the meeting along with some links to references the speaker made.

There are a lot of people making money off of those of us with neuropathy looking for the magic cure. Here are some of the sites I use when trying to verify whether something is not a scam.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I take supplements which helps me but it is by no means a cure. You can read my story in an earlier post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Here are some member posts on Low Level Laser Therapy:

@swiss
https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

@johnnyb are you able to do any exercise that helps with your mobility?

John

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Thank you fo the reply and information source.
I have asked once before and did not have any responses about PRP or Prolotherapy. Are there any information sources regarding this procedure and more important doe it work?
Thanks again and most appreciative about the information you provided.
Fred

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@goetf4997

Thank you fo the reply and information source.
I have asked once before and did not have any responses about PRP or Prolotherapy. Are there any information sources regarding this procedure and more important doe it work?
Thanks again and most appreciative about the information you provided.
Fred

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Hi Fred @goetf4997, I have no experience or knowledge of Prolotherapy but did find a few links that may provide a little more information.

Platelet-rich plasma and the elimination of neuropathic pain.
https://www.ncbi.nlm.nih.gov/pubmed/23832571

Sugar Coated Nerves: The Pseudo-Science of Neural Prolotherapy
http://nationalpainreport.com/sugar-coated-nerves-pseudo-science-neural-prolotherapy-8822875.html

Mayo Clinic — Is prolotherapy an effective treatment for chronic low back pain?
https://www.mayoclinic.org/prolotherapy/expert-answers/faq-20058347

There has been some success with Platelet Rich Plama (PRP) but I'm not sure about neuropathic pain. Mayo Clinic Regenerative Medicine has some information here:
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine

Hope this helps…
John

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