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

Good advice, thank you.

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@johnbishop

@stanstory — I have no medical training or background but just don't think the science is there yet for stem cell therapy for peripheral neuropathy.

We had a researcher speak at a meeting of the Minnesota Neuropathy Association on stem cell therapy research. I took some notes and added the research links when I got home. The last section of the notes details why the science is not there yet. I believe it's a big hope for all of us but right now there are a lot of people making money off of us folks with neuropathy making dubious claims that it works…and it's very expensive like you said. I certainly want it to be true and hope someone that has had it done will post their success or let us know if it helped.

My first call would be to the Better Business Bureau and see if there has been any complaints against the clinic doing the injections. I would also want to talk with more than one of their patients to see specifically what was done, what diagnosis they had and if it helped them.

Good luck whatever you decide. I know it's not easy to deal with neuropathy in your feet, legs or anywhere on the body. Probably my biggest concern is I wouldn't want to make it worse.

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Thanks for this insight. My UM Neurologist agrees with you. Here's my story: Sudden onset of symptoms upon awaking of a morning in 2007. Pinpricking and a feeling of walking in sand in both feet accompanied with occasional shooting pains in one foot or both at the same time. Diagnosed: Bilateral idiopathic neuropathy. Used a compounded topical salve for 3 months, followed by Botox injections in both feet. No effect. The following medications have been prescribed and taken as directed: Lyric, Neurontin, Pamelor, and Cymbalta. No effect followed by 16 Acupuncture treatments. Began using CBD from marijuana (20mg/day), periodic shooting pains have subsided, but other symptoms continue and walking has become unsteady. University of Michigan Neurologist suggests that my previous treatment with BCG treatment for bladder cancer may have been the side effect cause. Recently received information from local ‘Regenerative Specialists’ suggesting that the use/injection of stem cells may offer relief. Marketing sounds enticing, and I don't mean to be pejorative, but this marketing comes from two disparate Chiropractic Clinics.

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Be careful with stem cell injection — it is very expensive, and it has not been proven from any studies I have seen to help with neuropathy. We want the pain to go away so badly, that we will jump at anything that we think might work. Read the following article from Consumer Reports (March 2018 issue)

Could this cell save your life?

Stem cell therapy is an accepted treatment for just a short list of medical conditions. And yet some cell stem treatments are being offered for a wide range of illnesses. Those treatments are often ineffective and sometimes dangerous.

“There is an important difference between the stem cell treatments emerging from slow and careful study and the ones being sold for the thousands of dollars without any evidence of safety or efficacy,” states Orly Avitzur, M.D., Consumer Reports’ medical director. “But that difference is not being made clear to consumers.”
“Some institutions use patient testimonials to promote treatments that have not been scientifically proven. They create the impression that even though it’s experimental, it really works.” says Leigh Turner PhD, Bioethicist, University of Minnesota.

How to protect yourself
The Food and Drug Administration (FDA), the international Society for Stem Cell research, and Consumer Reports medical experts advise you to be cautious when considering stem cell therapy.

Beware of the hype and hefty fees. Doctors testing stem cell treatment in carefully controlled clinical trials usually don’t promote their offerings with big, flashing advertisements that promised dramatic improvements or total cures. They also don’t charge a lot. There may be some minor fees for travel or other personal expenses, but the treatment itself should be free or low-cost to participants. “A large price tag – especially in the range of thousands of dollars – should be a major red flag,” says Marvin M Littman M.D., Consumer Reports chief medical adviser. So should any doctor claiming to treat a wide range of medical conditions, such as autism, arthritis, and erectile dysfunction, with the same therapy. Different organs and body systems require different expertise – and different medicine – to treat, which is why most doctors specialize.

Ask questions. Any doctor who offers stem cell therapy should be able to explain where the cells will come from, what will be done to them before they’re injected into your body, and how, exactly, they will resolve your illness or injury. He or she should also be able to offer you proof of safety and efficacy, even for experimental treatments. Don’t settle for patient testimonials. Ask how many people the proposed therapy has been tested on – the more the better – and whether those tests were done in clinical trials or individual case studies. (Randomized controlled trials, where people given a treatment are compared with a control group that wasn’t, are best.) It’s also important to find out what the outcomes were. Ideally, side effects were minimal and significantly more people improved than did not.

Read the fine print. If the treatment is being offered as a clinical trial, make sure the trial has been vetted by the FDA, a process known as securing investigative new drug approval. The agency advises that you ask to see the actual approval letter to make sure it has been issued specifically for the treatment you’re considering. Treatments that have cleared this hurdle are much more likely to be safe than those that have not. You should also make sure that any informed consent document – an explanation of the experimental treatments that study participants are usually asked to sign – provides a clear description of the treatment being offered along with the risks, alternative options, and details about what to expect in the days and weeks after the procedure. It should not indemnify doctors or their institutions against liability for negligence.

Excerpts from Consumer Reports — March 2018 issue

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I have idiopathic small fiber and searching for a solution as well, came across Stem Cell Therapy for Neuropathic Pain: New Findings Show Promise Cleveland clinic

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Hello @ludite, @lois6524 and @navid80, Welcome to Mayo Clinic Connect. Thank you for sharing your thoughts on stem cell therapy for neuropathy. The only promising stem cell therapy for neuraopthy that I am aware of is for diabetic neuropathy. The Foundation for Peripheral Neuropathy has some information on it here from 2015:

Stem Cells Show Promise as Treatment for Diabetic Neuropathy
https://www.foundationforpn.org/2015/09/08/stem-cells-show-promise-as-treatment-for-diabetic-neuropathy/

I would be worried even thinking about it anywhere buy a major teaching hospital or healthcare provider. The small clinics (IMHO) do not have the sterile room facilities for offering stem cell treatments from what I've read. Which is probably one of the reasons the FDA has a beef with them.

Cell therapy: cGMP facilities and manufacturing
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3666518/

FDA Seeks Shutdown of Stem Cell Clinics
https://www.painnewsnetwork.org/stories/2018/5/10/fda-seeks-shutdown-of-stem-cell-clinics

The article shared by @navid80 shows real promise but they are still testing in rats and mice, not humans. I look forward to seeing something like this moving into clinical trials.

Stem Cell Therapy for Neuropathic Pain: New Findings Show Promise
https://consultqd.clevelandclinic.org/stem-cell-therapy-neuropathic-pain-new-findings-show-promise/

Liked by Dee

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has anyone tried Hyperbaric Oxegen Therapy for Neuropathy.?

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@navid80

has anyone tried Hyperbaric Oxegen Therapy for Neuropathy.?

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@navid80, I don't know much about HBOT therapy for peripheral neuropathy 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

@johnnyb talked about HBOT therapy in another discussion here but I don't know if he tried it due to the cost and not being covered by insurance or medicare:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=47#comment-243265

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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.

Liked by Dee

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@johnbishop

@navid80, I don't know much about HBOT therapy for peripheral neuropathy 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

@johnnyb talked about HBOT therapy in another discussion here but I don't know if he tried it due to the cost and not being covered by insurance or medicare:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=47#comment-243265

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PLEASE to everyone — please don't use acronyms — the first time you use it spell it, then it is ok to use an acronym == thanks

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Agreed, but to be fair "navid80" had spelled it out (Hydrobaric Oxygen Therapy) and John and I were commenting/replying to his/her post.

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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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Thanks, pre-much the same price in Arizona and not covered by insurance either. Do you know how much pressure (ATA) ?

Liked by Dee

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I guess there is a hope WinSantor is working hard on phase 2 that might be true cure for peripheral neuropathy

Liked by Dee

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@navid80

has anyone tried Hyperbaric Oxegen Therapy for Neuropathy.?

Jump to this post

I tried hyperbaric oxygen therapy for 40 days with no positive results. I have peripheral neuropathy that is very aggressive. Muscle loss, no balance, dropped feet.

Liked by Dee

REPLY
@lois6524

Be careful with stem cell injection — it is very expensive, and it has not been proven from any studies I have seen to help with neuropathy. We want the pain to go away so badly, that we will jump at anything that we think might work. Read the following article from Consumer Reports (March 2018 issue)

Could this cell save your life?

Stem cell therapy is an accepted treatment for just a short list of medical conditions. And yet some cell stem treatments are being offered for a wide range of illnesses. Those treatments are often ineffective and sometimes dangerous.

“There is an important difference between the stem cell treatments emerging from slow and careful study and the ones being sold for the thousands of dollars without any evidence of safety or efficacy,” states Orly Avitzur, M.D., Consumer Reports’ medical director. “But that difference is not being made clear to consumers.”
“Some institutions use patient testimonials to promote treatments that have not been scientifically proven. They create the impression that even though it’s experimental, it really works.” says Leigh Turner PhD, Bioethicist, University of Minnesota.

How to protect yourself
The Food and Drug Administration (FDA), the international Society for Stem Cell research, and Consumer Reports medical experts advise you to be cautious when considering stem cell therapy.

Beware of the hype and hefty fees. Doctors testing stem cell treatment in carefully controlled clinical trials usually don’t promote their offerings with big, flashing advertisements that promised dramatic improvements or total cures. They also don’t charge a lot. There may be some minor fees for travel or other personal expenses, but the treatment itself should be free or low-cost to participants. “A large price tag – especially in the range of thousands of dollars – should be a major red flag,” says Marvin M Littman M.D., Consumer Reports chief medical adviser. So should any doctor claiming to treat a wide range of medical conditions, such as autism, arthritis, and erectile dysfunction, with the same therapy. Different organs and body systems require different expertise – and different medicine – to treat, which is why most doctors specialize.

Ask questions. Any doctor who offers stem cell therapy should be able to explain where the cells will come from, what will be done to them before they’re injected into your body, and how, exactly, they will resolve your illness or injury. He or she should also be able to offer you proof of safety and efficacy, even for experimental treatments. Don’t settle for patient testimonials. Ask how many people the proposed therapy has been tested on – the more the better – and whether those tests were done in clinical trials or individual case studies. (Randomized controlled trials, where people given a treatment are compared with a control group that wasn’t, are best.) It’s also important to find out what the outcomes were. Ideally, side effects were minimal and significantly more people improved than did not.

Read the fine print. If the treatment is being offered as a clinical trial, make sure the trial has been vetted by the FDA, a process known as securing investigative new drug approval. The agency advises that you ask to see the actual approval letter to make sure it has been issued specifically for the treatment you’re considering. Treatments that have cleared this hurdle are much more likely to be safe than those that have not. You should also make sure that any informed consent document – an explanation of the experimental treatments that study participants are usually asked to sign – provides a clear description of the treatment being offered along with the risks, alternative options, and details about what to expect in the days and weeks after the procedure. It should not indemnify doctors or their institutions against liability for negligence.

Excerpts from Consumer Reports — March 2018 issue

Jump to this post

Buyer Beware. Excellent

Liked by Dee

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@navid80

Thanks, pre-much the same price in Arizona and not covered by insurance either. Do you know how much pressure (ATA) ?

Jump to this post

The pressure was less than two atmospheres, so, not too hard on the ears when pressuring up.
In reply to @ericvnelson. If you were in the chamber for 1-2 hours/day that may not have been enough. I went for 80 hours (out of a recommended 98) before I took a break for a vacation. The hyperbaric oxygen therapy (HBOT) had a beneficial effect for me but my neuropathy does not sound as severe as yours. Mine started in my feet and was up to my waist when I started HBOT. At the end of the 80 hours (every day from Dec 13 to Jan 25 with some 5 hour sessions) my legs were stronger and the pain was restricted to my lower legs. After my vacation, it has come back and is back up to my waist, so I may go back and take some more sessions. It may not be a cure, but it does seem to help.

Liked by Dee

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