Hi @stanstory, Welcome to Mayo Clinic Connect. May I ask where you are contemplating going for the stem cell treatment? As far as I know there has not been a successful treatment for neuropathy using stem cell therapy so it would be great to hear.
Hello, @stanstory. I'd like to add my welcome to Mayo Clinic Connect. I've moved your post to the discussion @johnbishop mentioned, "Stem Cell Therapy for Neuropathy."
Hoping that members like @dcl1128@jlsoerens@dsemloh will also join in to speak to whether they have tried stem cell injections in their feet for the treatment of peripheral neuropathy and any results, or what they may have found in looking into it, if it's not something they've yet tried. @jenniferhunter@gailfaith and @johnhans may also have some thoughts about this topic.
Will you share a little more about your background with peripheral neuropathy, @stanstory? When were you diagnosed? What kind of symptoms do you have from your neuropathy?
I have asked the same question. I have been to two different chiropractors and they offer stem cell injections into the feet and calves to treat neuropathy in the feet. I would like to hear from someone that has had this treatment and how the outcome was. It's expensive to have this done and want more info in the results. Maybe some will read this and help.
I have asked the same question. I have been to two different chiropractors and they offer stem cell injections into the feet and calves to treat neuropathy in the feet. I would like to hear from someone that has had this treatment and how the outcome was. It's expensive to have this done and want more info in the results. Maybe some will read this and help.
@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.
@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.
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.
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
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
John, Volunteer Mentor | @johnbishop | Feb 23, 2019
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:
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.
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.
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Has anyone done any stem cell injections in their feet for the treatment of peripheral neuropathy? If so what were the results?
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1 ReactionHi @stanstory, Welcome to Mayo Clinic Connect. May I ask where you are contemplating going for the stem cell treatment? As far as I know there has not been a successful treatment for neuropathy using stem cell therapy so it would be great to hear.
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1 ReactionHello, @stanstory. I'd like to add my welcome to Mayo Clinic Connect. I've moved your post to the discussion @johnbishop mentioned, "Stem Cell Therapy for Neuropathy."
Hoping that members like @dcl1128 @jlsoerens @dsemloh will also join in to speak to whether they have tried stem cell injections in their feet for the treatment of peripheral neuropathy and any results, or what they may have found in looking into it, if it's not something they've yet tried. @jenniferhunter @gailfaith and @johnhans may also have some thoughts about this topic.
Will you share a little more about your background with peripheral neuropathy, @stanstory? When were you diagnosed? What kind of symptoms do you have from your neuropathy?
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2 ReactionsI have asked the same question. I have been to two different chiropractors and they offer stem cell injections into the feet and calves to treat neuropathy in the feet. I would like to hear from someone that has had this treatment and how the outcome was. It's expensive to have this done and want more info in the results. Maybe some will read this and help.
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Hug
1 Reaction@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.
18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes-1.pdf)
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5 ReactionsGood advice, thank you.
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3 ReactionsThanks 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.
-
Like -
Helpful -
Hug
2 ReactionsBe 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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5 ReactionsI 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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2 ReactionsHello @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/
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