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

@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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Hello @neuroliz and welcone! I'm curious what kind of Dr you are referring to that is suggesting stem cells for neuropathy?
I have yet to find in my research (and I'm no Dr) that stem cell injections are a promising treatment however, I do understand the whole grasping at straws theory.

A bit about me…last year was my 3D year:
1. Diagnosis
2. Discovery
3. Decline

I spent the year panicking and in fear of what I was losing in my body on a daily basis. I was in denial, scraping and searching for any help or fix. This included lidocaine injections for over 5 months which were barely ever talked about in this forum. Nor were they outlined anywhere in treating my disease but, I was desperate for help and tried anyway.

My underlying cause of progressive small fiber polyneuropathy was B12 deficiency. Not to be pessimistic but, finding my cause did not get me ahead of my neuropathy. I might as well be idiopathic right along with you. This may not be true for all but, for me it is.

The lidocaine injections did nothing, bringing my b12 levels up did nothing, the nerve damage was done and it took a while for me to accept and come to terms with that. Each of us is very different and we all need to come to our own terms and that may take time to figure it all out.

I recommend a layered approach…learning as much as you possibly can, (watching @johnbishop recent you tube link on peripheral neuropathy), looking up government/fda findings, research studies by Dr. Anne Louise Oaklander, reading what others personal experiences have been, gathering tricks of the trade…then making educated decisions on what may work best for you, given your case and circumstances. Good communication with the proper Drs helps too.

Another layer is treatment approach…notable neuropathy meds, vitamins and supplements, eating a healthy nerve friendly diet, excercise/stretching that suits your abilities, mindfulness and meditation because the brain has potential to be our most powerful tool and influencer. Physical therapy, cognitive behavioral therapy, massage, acupuncture. Play around with it all to see what you may benefit from. Again, a layered approach.

It all sounds so easy to me now but, if some one told me this stuff in a nut shell last year, I would have been too overwhelmed to listen and apply exactly. It's up to each individual to navigate accordingly and like anything else in life sometimes it only works by trial and error.

I wish you clarity and easing of your pain. Hope that you will be your biggest and best advocate! We are here to help, support, encourage and comfort you. Best of luck on your journey. 🍀

Rachel

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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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Oh and btw …heat and ice have been my saviour most days.

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Has anyone had stem cell treatments?

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I'm brand new here but have been struggling with neuropathy in my feet for about a year and a half (and now legs, I think). I'm 69 and very fortunate based on some of the posts I've read. I have some pain, but not a lot; main issue is just fatigue in my legs. My balance is bad when just standing but ok when I'm moving. I'm still able to play tennis even – but barely; after an hour or so my legs are exhausted. I had surgery last October to fuse three discs in my neck because an MRI showed a severe compression at one point. While I do not regret the surgery, it apparently has not helped the neuropathy. I have attended two seminars on stem cell treatment (cells harvested from umbilical cords) and it sounds very promising. But my wife and PhD son are both very skeptical. Does Mayo or elsewhere offer this? Does anyone have any experience you can share? Thank you.

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@dennyk

I'm brand new here but have been struggling with neuropathy in my feet for about a year and a half (and now legs, I think). I'm 69 and very fortunate based on some of the posts I've read. I have some pain, but not a lot; main issue is just fatigue in my legs. My balance is bad when just standing but ok when I'm moving. I'm still able to play tennis even – but barely; after an hour or so my legs are exhausted. I had surgery last October to fuse three discs in my neck because an MRI showed a severe compression at one point. While I do not regret the surgery, it apparently has not helped the neuropathy. I have attended two seminars on stem cell treatment (cells harvested from umbilical cords) and it sounds very promising. But my wife and PhD son are both very skeptical. Does Mayo or elsewhere offer this? Does anyone have any experience you can share? Thank you.

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Hello @dennyk, Welcome to Mayo Clinic Connect. You will notice that we have merged your discussion with an active discussion with the same name so that you can meet other members discussing stem cell therapy for neuropathy. If you click the VIEW & REPLY button at the bottom of this email notification you received, it will take you directly to the post in the discussion.

I would recommend reading the post by @colleenyoung that was posted earlier in this discussion here:
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-110326

There are also a few other links posted earlier in the discussion that I list here for convenience.

Reference info: ‘Amazing’ New Stem Cell Treatment for Neuropathy (July 2015)
https://www.painnewsnetwork.org/stories/2015/7/12/amazing-stem-cell-treatment-for-neuropathy
National Institutes of Health – Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/

@dennyk I do understand why you would want stem cell therapy to be an option for neuropathy but like your wife and son I am skeptical. May I ask what seminar you attended discussing stem cell treatment for neuropathy? Was it a sponsored event by a stem cell clinic?

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@johnbishop

Hello @dennyk, Welcome to Mayo Clinic Connect. You will notice that we have merged your discussion with an active discussion with the same name so that you can meet other members discussing stem cell therapy for neuropathy. If you click the VIEW & REPLY button at the bottom of this email notification you received, it will take you directly to the post in the discussion.

I would recommend reading the post by @colleenyoung that was posted earlier in this discussion here:
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-110326

There are also a few other links posted earlier in the discussion that I list here for convenience.

Reference info: ‘Amazing’ New Stem Cell Treatment for Neuropathy (July 2015)
https://www.painnewsnetwork.org/stories/2015/7/12/amazing-stem-cell-treatment-for-neuropathy
National Institutes of Health – Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/

@dennyk I do understand why you would want stem cell therapy to be an option for neuropathy but like your wife and son I am skeptical. May I ask what seminar you attended discussing stem cell treatment for neuropathy? Was it a sponsored event by a stem cell clinic?

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Thank you for the very quick response John – much appreciated. I have read and looked at some of what you cited and kind of feel like one lady commented – 'it's all rather overwhelming' and I would add it's hard to know what to believe. The first seminar I attended was in May of 2019 put on by Missouri Institute of Regenerative Health (www.missouriregen.com) and the second was by Summit Health Centers (www.SummitHealthCenters.com) in December of 2019.

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@dennyk

Thank you for the very quick response John – much appreciated. I have read and looked at some of what you cited and kind of feel like one lady commented – 'it's all rather overwhelming' and I would add it's hard to know what to believe. The first seminar I attended was in May of 2019 put on by Missouri Institute of Regenerative Health (www.missouriregen.com) and the second was by Summit Health Centers (www.SummitHealthCenters.com) in December of 2019.

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@dennyk I know it can be a bit overwhelming. I posted this in another discussion but will repeat it here. I think stem cell therapy holds promise but it's just not there yet and I have yet to hear of a successful neuropathy stem cell treatment although there have been a lot of clinics claiming it works and the FDA has warned against them.

I attached some notes I took at a Minnesota Neuropathy Association meeting August 2018 where the speaker was discussing the outlook of stem cell treatments for neuropathy. The last section of the notes has links to why it's not ready for prime time treatment yet. Also the FDA has put out several warnings on these clinics popping up all over the U.S.

FDA Warns About Stem Cell Therapies
https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm

18Aug04 Minnesota Neuropathy Association Meeting Notes:
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/01/18Aug04-MNA-Mtg-Notes.pdf
More resources for information…
The ISSCR Patient Handbook on Stem Cell Therapies:
https://www.closerlookatstemcells.org/patient-resources/#handbook
Stem Cell Treatments: What to Ask:
https://www.closerlookatstemcells.org/stem-cells-medicine/stem-cell-treatments-what-to-ask/
Nine Things to Know About Stem Cell Treatments:
http://www.closerlookatstemcells.org/stem-cells-and-medicine/nine-things-to-know-about-stem-cell-treatments

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