Stem cell treatment for peripheral neuropathy - any good?

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

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 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 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.

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

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/

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.