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nightgig
@nightgig

Posts: 6
Joined: Sep 26, 2018

Stem cell treatment for peripheral neuropathy - any good?

Posted by @nightgig, Tue, Sep 25 7:32pm

I just attended a very convincing presentation of stem cell treatment for peripheral neuropathy. It showed that the symptoms can virtually disappear in a month or so. If its so good, why can't I find anything that the Mayo Clinic is doing? Also, the Mayo website says that 'some medications are possible causes of peripheral neuropathy, but doesn't say which ones! The presentation today said the culprit was statin drugs. I have been taking statins for 20 years or more. Should I stop?

REPLY

Hello @nightgig, welcome to Connect. There is a lot of evidence available on statins and other drugs that are linked to neuropathy. Here are some links to more information on drugs that cause neuropathy. I have small fiber peripheral neuropathy but only have the numbness and no pain. I did tell my doctor I would not take statins when she wanted me to take them to lower my cholesterol levels. I said I would work on lowering the numbers by changing my diet.

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

I have not seen any evidence of the successful stem cell treatment for peripheral neuropathy. The last meeting of the Minnesota Neuropathy Association had a speaker William Hoffman of the U of M Medical School who gave an update on stem cell treatment and how far along it is relating to peripheral neuropathy. I attached the notes I took at the meeting along with some links I added with additional information on the speakers references.

There is also a consumer update from the FDA:

FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

@nightgig can I ask what type of peripheral neuropathy you have and what you are doing for treatment now?

John

Shared files

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

Well, my peripheral neuropathy sounds like yours, John. I have had tingling sensations in my feet for 20 years and in my hands for the last four years or so. I have never had pain other than trying to walk on pebbles on the beach. (Very painful) I too, asked the Dr. (also a she) if I should quit taking statin drugs. She said "No, we'll keep your cholesterol in check this way to safeguard your heart". I have a heart murmur and my folks both died from heart problems. (both were smokers, though. whereas, I've never smoked.)

@nightgig

Well, my peripheral neuropathy sounds like yours, John. I have had tingling sensations in my feet for 20 years and in my hands for the last four years or so. I have never had pain other than trying to walk on pebbles on the beach. (Very painful) I too, asked the Dr. (also a she) if I should quit taking statin drugs. She said "No, we'll keep your cholesterol in check this way to safeguard your heart". I have a heart murmur and my folks both died from heart problems. (both were smokers, though. whereas, I've never smoked.)

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@nightgig it does sound like my PN is pretty much like yours. Both my parents were smokers also and I've never smoked. I posted my story and what has worked for me in an earlier post if you are interested:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

When I had the chat with my primary care doctor about taking simvastatin to lower my cholesterol, I told her that I would work on lifestyle changes to help lower the numbers which I thought would be a greater benefit to me that taking statins and making my neuropathy worse. There is some information that might help explain the numbers better – here's one link that I found:

Harvard Medical School – Cholesterol and statins: it’s no longer just about the numbers
https://www.health.harvard.edu/blog/cholesterol-and-statins-its-no-longer-just-about-the-numbers-201311136868

I would keep doing research and advocating for your health. It really is the key to finding something that works for you.

I attended a meeting/consultation with the Dr. (Chiropractor) yesterday and was told that I could get the feet free of tingling or the hands, for $5000. The feet procedure is more common and thus, more reliable. The stem cell treatment for the hands was estimated as for 40 – 60% and the fett were 80-90% effective. I like the Dr. and he did not in any way seem either incompetent or a salesman for the procedures. I told him that I would get advice from my MD.

@nightgig

I attended a meeting/consultation with the Dr. (Chiropractor) yesterday and was told that I could get the feet free of tingling or the hands, for $5000. The feet procedure is more common and thus, more reliable. The stem cell treatment for the hands was estimated as for 40 – 60% and the fett were 80-90% effective. I like the Dr. and he did not in any way seem either incompetent or a salesman for the procedures. I told him that I would get advice from my MD.

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@nightgig it's good you are doing research to help you make an informed decision. It would be interesting to hear what your doctor thinks. There is a lot of hope out there for those of us with PN for stem cell therapy. My own personal opinion is that they have not really shown that it works yet for nerve regeneration because they haven't had any FDA approved clinical trials to show any kind of success. Also, at the last meeting of the Minnesota Neuropathy Association we had a speaker William Hoffman of the U of M Medical School who has been involved in documenting and writing about stem cell research for many years. My notes from the meeting about his outlook for treating peripheral neuropathy:

Outlook for Treating Peripheral Neuropathy
— Stem cell transplantation remains largely at the pre-clinic stage
— Proper stem cell homing and migration remain a concern
— Stem cell transplantation has shown some benefit but is still inferior to nerve repair with conventional techniques
— Pre-clinical and eventually clinical studies comparing different types of stem cell are needed
— Optimal Schwann cell differentiation has yet to be achieved

A little explanation for the last bullet:
The Wound Microenvironment Reprograms Schwann Cells to Invasive Mesenchymal-like Cells to Drive Peripheral Nerve Regeneration
https://www.cell.com/neuron/abstract/S0896-6273(17)30843-7
The repair Schwann cell and its function in regenerating nerves
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929314/

If you do decide to go with the stem cell treatment, I would really like to hear how it went for you.

Good luck with whatever you decide.

John

Hi John, I really admire your work. The facts are scattered about the success rates of PN. My situation seems more comfortable now that I have someone to talk to that shows some serious chops for dealing with people that need help. You said that you weren't a Dr. but I'll bet you're a pro in some field that is now serving others – and very well at that. Thanks for your time and contributions.

As a musician, my PN presents some interesting situations. Sometimes playing the sax my fingers get so buzzy that I nearly drop m soprano sax.

Kitchen Photo - Bob

Insurance co. Doesn't pay for it and it is very expensive, my doctor told me.

@nightgig

Hi John, I really admire your work. The facts are scattered about the success rates of PN. My situation seems more comfortable now that I have someone to talk to that shows some serious chops for dealing with people that need help. You said that you weren't a Dr. but I'll bet you're a pro in some field that is now serving others – and very well at that. Thanks for your time and contributions.

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Thank you for the kind words @nightgig. I do like helping people and volunteering. I'm still working full time at 76 and feel blessed that I'm able to do it. I found Connect when I was searching for answers that would help my neuropathy.

I also do the website for the Minnesota Neuropathy Association – http://neuropathy-mn.org/ which has given me a good perspective on how many folks are affected by neuropathy. At our 20 year celebration of the MN Neuropathy Association we had 3 speakers and I got a good laugh out of the last one who was an 80+ year old neurologist and my favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it. Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: The William R. Kennedy Lab – http://kennedylab.med.umn.edu/

@nightgig

As a musician, my PN presents some interesting situations. Sometimes playing the sax my fingers get so buzzy that I nearly drop m soprano sax.

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Nice picture! I always wanted to play the sax but I've only been blessed with listening skills.☺ I can understand your concerns with PN with the possibility of not being able to play the saxophone anymore. My biggest fear was losing the ability to drive and just plain walking. Hoping you find something that works for you.

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@johnbishop

Nice picture! I always wanted to play the sax but I've only been blessed with listening skills.☺ I can understand your concerns with PN with the possibility of not being able to play the saxophone anymore. My biggest fear was losing the ability to drive and just plain walking. Hoping you find something that works for you.

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Don't know if you watch America's Got Talent, but in just this season that came to a close last week there was a young man – a violinist (albeit not the kind of violinist I think of when I hear 'violinist') – but he was young, and said he had neuropathy, and then stated that he hoped to play as long as he was able – he was pretty amazing!!!!

I have a combination of Asteoarthritis and Peripheral Neuropathy. The stiffness I have in my hands is joined by the tingling of my PN. I'm not suffering – yet. However, the progression hasn't been researched yet on my part. I'm 80, and enjoying otherwise good health, so I'm not complaining. I perform for folks in retirement homes, memory care facilities and nursing homes and feel akin to those folks, many of whom are not in good shape. I actually feel that its a privilege to play for them! They love music and are a great audience, ev ery time.
I was fortunate to have traveled around the U.S. A. and in many countries, performing in castles, concert halls, pubs, and famous venues for five years. During that time I realized that at age 68 I was very fortunate to still be working as a traveling musician. Now, in retirement I am dealing with the same PN I had during those years but now with my hands being affected by the PN and not just the Arthritis. As we grow older new problems pop up, as we all know. The difference is always the degree to which we are limited in doing what we enjoy and to what degree it restrains us. I'm personally hard to restrain, I've found, as it seems I'm an eternal optimist.

@nightgig

I have a combination of Asteoarthritis and Peripheral Neuropathy. The stiffness I have in my hands is joined by the tingling of my PN. I'm not suffering – yet. However, the progression hasn't been researched yet on my part. I'm 80, and enjoying otherwise good health, so I'm not complaining. I perform for folks in retirement homes, memory care facilities and nursing homes and feel akin to those folks, many of whom are not in good shape. I actually feel that its a privilege to play for them! They love music and are a great audience, ev ery time.
I was fortunate to have traveled around the U.S. A. and in many countries, performing in castles, concert halls, pubs, and famous venues for five years. During that time I realized that at age 68 I was very fortunate to still be working as a traveling musician. Now, in retirement I am dealing with the same PN I had during those years but now with my hands being affected by the PN and not just the Arthritis. As we grow older new problems pop up, as we all know. The difference is always the degree to which we are limited in doing what we enjoy and to what degree it restrains us. I'm personally hard to restrain, I've found, as it seems I'm an eternal optimist.

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Great attitude! A glass half full is always better than a glass half empty ☺

@johnbishop

Great attitude! A glass half full is always better than a glass half empty ☺

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I saw that mayo doing stem cells for osteoauritis. Ins does not pay. It was a video from one of the Mayo Clinic’s. Regenerative medecine in Florida. Can’t remember drs name.

I don't like to be the one to say this, but my understanding is that stem cell treatment has never cured any illness. I guess those in the know feel that the benefits of trying it are going to suddenly blossom in to success. But as of today, stem cell therapy is unproven, but that doesn't stop people from promising miracle cures in some countries. I read on Quora.com that someone asked the question, "Does stem cell therapy work?" One response was, "The short answer is no. We do not have a good enough protocol to safely inject stem cells and control their differentiation in vivo."

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