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.
@neuroliz you are definitely not an idiot. I also have idiopathic small fiber PN. I just have numbness in my ankles and feet but have had it for 20+ years. A few years ago at a Minnesota Neuropathy Association meeting we had an 80 year old neurologist as a speaker and one of the things he told us that made me laugh was how the term idiopathic came about for a diagnosis - from the idiot that couldn't figure it out (in so many words). 🙂
I'm 69, and have idiopathic small fiber polyneuropathy and am in the early stage of autonomic neuropathy.
There's a very long list of medications a person could take that might relieve the burning pain of neuropathy. The list of medications most commonly used and are used specifically for neuropathy isn't that long. But a pain specialist has a long list of medications that are intended for treating other things, but will sometimes give relief from neuropathy pain (called off-label use).
Many people find a medication right off the bat that gives them relief. I'm unfortunately not part of that group. I've been trying one medication after another for a very long time. Some of them did nothing, some had unacceptable side effects, some of them helped with the pain but had unacceptable side effects, up to putting me in the hospital, some of them worked a little bit. My journey has included all of the above.
I found a few years ago that morphine sulfate contin made my pain more bearable, but I try to take as little as possible. Last fall my pain specialist moved on down his list to the next to the last medication, and I finally found something that helps noticably - imipramine. I still have days when the pain is up to 8, but it's not constant.
In June of 2017, I had a Burst DR spinal cord stimulator implant. A one week trial is required, and I had 80% relief! It was wonderful! I had forgotten how that had felt. A few weeks later I had the permanent implant and after the surgical site healed, I began a year of level 2-3 pain. After a year, the pain started returning, and since then I've been having the stimulator adjusted every 3 months. I know that it's still helping, but I experience pain at between 2 and 6, depending on what activity I'm doing. The next thing I'm considering is a dorsal root ganglion stimulator implant because it can target nerves with greater accuracy, working more specifically on the nerves involved.
So, that's what I've been doing for the neuropathy over the past ten years. The progression has been, first the tingling in my feet and legs, then added pain in the balls of my feet, becoming more of a burning pain, then it spread to include the top of my feet, to where it is now, from my toes to my ankles.
Did you have a similar onset? Have you tried any numbing cream or cbd oil? I suppose you've tried various medications - Gabapentin, Lyrica, etc. I've met with a number of specialists, some of them more helpful than others. I have a good pain specialist, who's been working with me for several years in, what I'm sure has been, a search for the magic pill. Some people have been having good success with medical marijuana, but my doctor has told me that if I decide to go that route he would no longer prescribe pain meds. So, that's out. But we all keep searching. I wish you well.
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.
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. 🍀
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.
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.
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.
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.
@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?
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.
@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?
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.
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.
@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.
Have severe case of numbness in both lower legs, loss of strength and some minor shooting pains in feet.The shooting pains are not severe enough to be concerned with. Numbness in left hand which is my dominate hand with loss of strength. The neuropathy is a result of the chemo therapy for ureter cancer two years ago. There has been some minor improvement in my hand. No improvement in legs. The oncologist is useless dealing with the problem. I am happy with a pain doctor addressing deteriorating back issues. I am 78 and earned the problem legitimately. I will meet with him in a few weeks and wanted to talk about stem cell treatment for neuropathy symptoms. Anyone have experience with stem cell treatment? Thank you.
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@neuroliz you are definitely not an idiot. I also have idiopathic small fiber PN. I just have numbness in my ankles and feet but have had it for 20+ years. A few years ago at a Minnesota Neuropathy Association meeting we had an 80 year old neurologist as a speaker and one of the things he told us that made me laugh was how the term idiopathic came about for a diagnosis - from the idiot that couldn't figure it out (in so many words). 🙂
I would be wary of a doctor wanting to inject stem cells in my back and ankles to get rid of neuropathy pain. I take supplements that help with my neuropathy and has helped others with pain symptoms but it's not covered by Medicare either. You can read what helps me in my story posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@rwinney @jimhd @artscaping and others may have some suggestions for you also.
Hi @neuroliz
I'm 69, and have idiopathic small fiber polyneuropathy and am in the early stage of autonomic neuropathy.
There's a very long list of medications a person could take that might relieve the burning pain of neuropathy. The list of medications most commonly used and are used specifically for neuropathy isn't that long. But a pain specialist has a long list of medications that are intended for treating other things, but will sometimes give relief from neuropathy pain (called off-label use).
Many people find a medication right off the bat that gives them relief. I'm unfortunately not part of that group. I've been trying one medication after another for a very long time. Some of them did nothing, some had unacceptable side effects, some of them helped with the pain but had unacceptable side effects, up to putting me in the hospital, some of them worked a little bit. My journey has included all of the above.
I found a few years ago that morphine sulfate contin made my pain more bearable, but I try to take as little as possible. Last fall my pain specialist moved on down his list to the next to the last medication, and I finally found something that helps noticably - imipramine. I still have days when the pain is up to 8, but it's not constant.
In June of 2017, I had a Burst DR spinal cord stimulator implant. A one week trial is required, and I had 80% relief! It was wonderful! I had forgotten how that had felt. A few weeks later I had the permanent implant and after the surgical site healed, I began a year of level 2-3 pain. After a year, the pain started returning, and since then I've been having the stimulator adjusted every 3 months. I know that it's still helping, but I experience pain at between 2 and 6, depending on what activity I'm doing. The next thing I'm considering is a dorsal root ganglion stimulator implant because it can target nerves with greater accuracy, working more specifically on the nerves involved.
So, that's what I've been doing for the neuropathy over the past ten years. The progression has been, first the tingling in my feet and legs, then added pain in the balls of my feet, becoming more of a burning pain, then it spread to include the top of my feet, to where it is now, from my toes to my ankles.
Did you have a similar onset? Have you tried any numbing cream or cbd oil? I suppose you've tried various medications - Gabapentin, Lyrica, etc. I've met with a number of specialists, some of them more helpful than others. I have a good pain specialist, who's been working with me for several years in, what I'm sure has been, a search for the magic pill. Some people have been having good success with medical marijuana, but my doctor has told me that if I decide to go that route he would no longer prescribe pain meds. So, that's out. But we all keep searching. I wish you well.
Jim
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3 ReactionsHello @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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5 ReactionsOh and btw ...heat and ice have been my saviour most days.
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2 ReactionsHas anyone had stem cell treatments?
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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Helpful -
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1 ReactionHello @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?
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.
@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
Have severe case of numbness in both lower legs, loss of strength and some minor shooting pains in feet.The shooting pains are not severe enough to be concerned with. Numbness in left hand which is my dominate hand with loss of strength. The neuropathy is a result of the chemo therapy for ureter cancer two years ago. There has been some minor improvement in my hand. No improvement in legs. The oncologist is useless dealing with the problem. I am happy with a pain doctor addressing deteriorating back issues. I am 78 and earned the problem legitimately. I will meet with him in a few weeks and wanted to talk about stem cell treatment for neuropathy symptoms. Anyone have experience with stem cell treatment? Thank you.
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