Stem Cell Therapy for Neuropathy

Posted by jlsoerens @jlsoerens, Jun 13, 2018

Does Mayo Clinic use stem cell therapy for neuropathic issues? Have any of you tried stem cell therapy?

Liked by marystefy

@gregsmobil

my neuropathy is in the feet ankles down three fingers and thumb, I do have the numbness and also the pain, burning feeling, sharp light 22 shell just shot you mostly at night. cant sleep some nights

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Hello @gregsmobil, Welcome to Connect. Sadly I can tell you that you are not alone with your symptoms. There is another discussion on Connect that you might be helpful to join and read what others are trying for treatments.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Are you able to share a little more about your diagnosis and any treatments you are using or have tried?

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@gregsmobil

my neuropathy is in the feet ankles down three fingers and thumb, I do have the numbness and also the pain, burning feeling, sharp light 22 shell just shot you mostly at night. cant sleep some nights

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Hi, @gregsmobil – how has your sleep been the last couple of nights with the neuropathic symptoms you mentioned you've experienced?

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I heard something on the TV about a treatment for neuropathy that takes Medicare, but I did not get the phone number. Could you help me.

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@jacksgarden

I heard something on the TV about a treatment for neuropathy that takes Medicare, but I did not get the phone number. Could you help me.

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Hello @jacksgarden, Welcome to Connect. I would be highly suspect of any neuropathy TV commercial and especially if they mention that they take Medicare. This is just my opinion based on my struggle to find something to help my small fiber peripheral neuropathy. I shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Are you able to share a little more about your neuropathy diagnosis and how long you have had it?

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@ndttech

I have tried 80 hours of HBOT recently and found that it did help my neuropathy. Here is Canada, the HBOT cost was reasonable ($100CDN/hr); although I hear that it can be much more expensive in other places. When I started the HBOT my neuropathy pain was up to my waist (pin, needles, tingling, dull pain that is there 24/7 plus numbness and freezing/burning in my feet depending on whether I was standing or laying down). After the 80 hours, the neuropathy was below my knees and my legs were considerably stronger. If anyone if in Alberta, I can give you the contact name and phone number. Also: for SOME conditions, HBOT can be covered by our health care or a private plan; however, in my case it was NOt covered. I understand that open ulcers on the feet (caused by neuropathy) are covered by Alberta Health Care.

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Hi, Im in Calgary. Would like to have more information please. thanks

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@ecc79

Hi, Im in Calgary. Would like to have more information please. thanks

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Hello @ecc79, welcome to Mayo Clinic Connect. There is a post by @colleenyoung earlier in this discussion that has some really good information and links about stem cell therapy for neuropathy. Here is the post by Colleen – https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-110326

I attended a meeting on stem cell therapy for neuropathy at the Minnesota Neuropathy Association in August 2018. Here is a link to my post with notes on the meeting: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-273652

@ecc79 are you considering stem cell treatment?

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@johnbishop

Hello @ecc79, welcome to Mayo Clinic Connect. There is a post by @colleenyoung earlier in this discussion that has some really good information and links about stem cell therapy for neuropathy. Here is the post by Colleen – https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-110326

I attended a meeting on stem cell therapy for neuropathy at the Minnesota Neuropathy Association in August 2018. Here is a link to my post with notes on the meeting: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-273652

@ecc79 are you considering stem cell treatment?

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Thank you John, that’s good stuff. I am glad to have found this site. I will follow the dialogue closely and find the experiences people share helpful and informative. I am sure to join on the discussion going forward.
Derek

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@ndttech

I have tried 80 hours of HBOT recently and found that it did help my neuropathy. Here is Canada, the HBOT cost was reasonable ($100CDN/hr); although I hear that it can be much more expensive in other places. When I started the HBOT my neuropathy pain was up to my waist (pin, needles, tingling, dull pain that is there 24/7 plus numbness and freezing/burning in my feet depending on whether I was standing or laying down). After the 80 hours, the neuropathy was below my knees and my legs were considerably stronger. If anyone if in Alberta, I can give you the contact name and phone number. Also: for SOME conditions, HBOT can be covered by our health care or a private plan; however, in my case it was NOt covered. I understand that open ulcers on the feet (caused by neuropathy) are covered by Alberta Health Care.

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So the Hyperbaric chamber decrease your neuropathic pain?

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I am sciatic nerve pain in my left lower back, hip, leg and foot. Dull/shooting pain l, tightness and tingling in the left foot and right toes. Will stem cell help???

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@kreisbmb

I am sciatic nerve pain in my left lower back, hip, leg and foot. Dull/shooting pain l, tightness and tingling in the left foot and right toes. Will stem cell help???

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Hi, @kreisbmb – welcome to Mayo Clinic Connect. Since my understanding is that the pain, tightness and tingling you are experiencing are related to sciatic nerve pain and not neuropathy, I'd like to suggest you check out a couple of Connect threads on stem cell therapy:

Groups>Chronic Pain > https://connect.mayoclinic.org/discussion/stem-cell-therapy-4/

Groups > Autoimmune Diseases > Stem cell therapy? > https://connect.mayoclinic.org/discussion/stem-cell-therapy-3/

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@neuroliz

Has anyone had stem cell treatments?

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Hi @neuroliz — Welcome to Connect. There is another discussion where your post will receive more visibility and you can meet other members discussing stem cell treatments for neuropathy. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion:

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you looked into stem cell treatment for some form of neuropathy? Are you able to share your diagnosis?

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@johnbishop

Hi @neuroliz — Welcome to Connect. There is another discussion where your post will receive more visibility and you can meet other members discussing stem cell treatments for neuropathy. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion:

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you looked into stem cell treatment for some form of neuropathy? Are you able to share your diagnosis?

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I have been diagnosed with idiopathic neuropathy which means I’ve had all the tests and they can’t figure out what’s causing it so that makes me an idiot I guess. I have burning in my feet and ankles. It’s moving up unto my calves and thighs. Heat, burning. Pins, needles. I spent most of Monday night and Tuesday in the recliner with ice on my feet, calves, and thighs. The doctor wants to inject stem cells in my back and both my ankles.
Medicare won’t pay for the treatments.

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@neuroliz

Has anyone had stem cell treatments?

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One has to be very careful when considering Stem Cell therapy… some is not real… but here are two links to some work at Mayo.. https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/in-depth/stem-cells/art-20048117

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@neuroliz

I have been diagnosed with idiopathic neuropathy which means I’ve had all the tests and they can’t figure out what’s causing it so that makes me an idiot I guess. I have burning in my feet and ankles. It’s moving up unto my calves and thighs. Heat, burning. Pins, needles. I spent most of Monday night and Tuesday in the recliner with ice on my feet, calves, and thighs. The doctor wants to inject stem cells in my back and both my ankles.
Medicare won’t pay for the treatments.

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@neuroliz you are definitely not an idiot. I also have idiopathic small fiber PN. I just have numbness in my ankles and feet but have had it for 20+ years. A few years ago at a Minnesota Neuropathy Association meeting we had an 80 year old neurologist as a speaker and one of the things he told us that made me laugh was how the term idiopathic came about for a diagnosis – from the idiot that couldn't figure it out (in so many words). 🙂

I would be wary of a doctor wanting to inject stem cells in my back and ankles to get rid of neuropathy pain. I take supplements that help with my neuropathy and has helped others with pain symptoms but it's not covered by Medicare either. You can read what helps me in my story posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@rwinney @jimhd @artscaping and others may have some suggestions for you also.

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@neuroliz

Has anyone had stem cell treatments?

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Hi @neuroliz

I'm 69, and have idiopathic small fiber polyneuropathy and am in the early stage of autonomic neuropathy.

There's a very long list of medications a person could take that might relieve the burning pain of neuropathy. The list of medications most commonly used and are used specifically for neuropathy isn't that long. But a pain specialist has a long list of medications that are intended for treating other things, but will sometimes give relief from neuropathy pain (called off-label use).

Many people find a medication right off the bat that gives them relief. I'm unfortunately not part of that group. I've been trying one medication after another for a very long time. Some of them did nothing, some had unacceptable side effects, some of them helped with the pain but had unacceptable side effects, up to putting me in the hospital, some of them worked a little bit. My journey has included all of the above.

I found a few years ago that morphine sulfate contin made my pain more bearable, but I try to take as little as possible. Last fall my pain specialist moved on down his list to the next to the last medication, and I finally found something that helps noticably – imipramine. I still have days when the pain is up to 8, but it's not constant.

In June of 2017, I had a Burst DR spinal cord stimulator implant. A one week trial is required, and I had 80% relief! It was wonderful! I had forgotten how that had felt. A few weeks later I had the permanent implant and after the surgical site healed, I began a year of level 2-3 pain. After a year, the pain started returning, and since then I've been having the stimulator adjusted every 3 months. I know that it's still helping, but I experience pain at between 2 and 6, depending on what activity I'm doing. The next thing I'm considering is a dorsal root ganglion stimulator implant because it can target nerves with greater accuracy, working more specifically on the nerves involved.

So, that's what I've been doing for the neuropathy over the past ten years. The progression has been, first the tingling in my feet and legs, then added pain in the balls of my feet, becoming more of a burning pain, then it spread to include the top of my feet, to where it is now, from my toes to my ankles.

Did you have a similar onset? Have you tried any numbing cream or cbd oil? I suppose you've tried various medications – Gabapentin, Lyrica, etc. I've met with a number of specialists, some of them more helpful than others. I have a good pain specialist, who's been working with me for several years in, what I'm sure has been, a search for the magic pill. Some people have been having good success with medical marijuana, but my doctor has told me that if I decide to go that route he would no longer prescribe pain meds. So, that's out. But we all keep searching. I wish you well.

Jim

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