Do you mean is neuropathy curable? In theory, if you can identify the root cause and the root cause is treatable, and can be treated before damage is done to the nerves…I suppose it could be curable, i.e. low B12 levels that cause neuropathy can be addressed.
But more than 30% of small fiber neuropathies (which is what I have) have no known cause. And even if we suspect the cause, there’s not a cure for my underlying conditions…
Which to me, brings it back to “treatable,” at least with the neuropathy I have.
This is undoubtedly the question of the century for many of us. I have spent quite a bit of my life trying to understand why neuropathy occurs and why it is not curable. I watched the Oppenheimer movie about the Atomic Bomb Sunday night. What a nightmare that became. Just being able to create a "bomb" did not cure anything about how to live together in harmony on what we are learning is quite a small planet that is at this point considered to be overpopulated by many.
So #1 is a search for the answer to "How do you get neuropathy?" Idiopathic does not satisfy our expectation that our medical community is expected to find the cause of all illnesses, diseases, and, conditions. I tested positive by biopsy for SFN. That means there just are not enough alive, healthy, and active nerves to do what they have been designed to do. We understand the damage done by prior conditions, and/or their treatments. I can imagine how the trauma in my life from surgeries and accidents put a temporary hold or slow down on the regenerative abilities of nerves that will be able to do their job consistently and painlessly.
Nerve regeneration is a long process. Can we speed it up with a medication or a treatment? It appears that today we run out of time on this "small" planet to wait for the regeneration process to give us healthy muscles that sit up and take notice quickly. The alternative is to deal with the pain messages that our brains generate in a way that focuses on "Quality of Life".
I would love to post a statement that screams....."Stem Cells now available for Neuropathy."
What I can do is applaud the efforts of all of you and other Connect members. You are sharing options with each other very generously. You are reporting the results of your "options" very openly and with the intent of informing. You all have the lifetime honor of becoming an "NLP" neuropathy leader of the pack.
May you all have happiness and the causes of happiness.
Chris
I agree. “Idiopathic” is one of my least favorite words related to chronic pain. In my head it’s translated to: “We don’t feel it’s worth the effort to try to figure it out.” And then it’s typically followed by the provider asking if I’ve ever tried Lyrica or gabapentin.
My small fiber neuropathy (initially classified as idiopathic) is suspected to be of autoimmune origin because I have an autoimmune arthritis and I first started having symptoms 2 weeks after a very bad cold virus. For unknown reasons (like with covid) viral infections are suspected to flip a switch in the immune system.
I’ve also tested positive for something called the FGFR3 autoantibody. Research is being done to see if something like IVIG could treat or even “cure” it. But it’s nearly impossible to find a neurologist willing to look into this or attempt it. The neurologist who diagnosed me moved out of state.
So, at least in my situation there’s a potential biological explanation. I also have something called motor autonomic pain, which happens when the parts of the brain that manage the sensory and motor connections don’t communicate well with my peripheral nerves, causing pain. It’s thought that we can retrain them brain/CNS to communicate better. I am doing/have done PT geared toward this specific issue and my symptoms have improved.
I kind of see that as a potential cure…if there was a way to re-train the brain/nervous system to stop delivering the pain response. That’s kind of my pipe dream…
@gba - When I first read your post, I immediately thought "no and no"...but then, it's more than that. I always enjoy posts by Chris Trout who has the ability to look at things from experience and various perspectives. The stem cell point is something that I feel has to be given a lot of consideration. Personally....I doubt anything can be curable until it is first treatable. As it stands, only about 8% of us have PN. Covid, cancer, heart disease and other things that can take our lives have taken center stage. And, think about this, when you tell someone, you have peripheral neuropathy, most people never heard of it and if they did, they got it wrong. First, figure out how to regenerate never damage and through treatment, you might just find the cure. So, I will revise my initial reaction to: Hopeful and possible. Thanks for bringing this up! Ed
@gba, You will notice that we added a little to your discussion title so that members can find it better when searching and to better describe what your discussion is about.
My thoughts on the question is no, maybe or huh? Like my good friend Chris @artscaping my hope is sitting sometime in the future past my lifetime but hopefully available for others down the road using stem cell therapy. There is some progress being made on stem cell therapy for diabetic neuropathy that I think shows some promise but I'm not sure it's available yet. 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/. I attached my notes from a 2018 meeting of the Minnesota Neuropathy Association on Stem Cell Therapy for Neuropathy. It has a lot of links to reference material that might be interesting if not helpful to understand where we are at with Stem Cell Therapy and Neuropathy.
I agree. “Idiopathic” is one of my least favorite words related to chronic pain. In my head it’s translated to: “We don’t feel it’s worth the effort to try to figure it out.” And then it’s typically followed by the provider asking if I’ve ever tried Lyrica or gabapentin.
My small fiber neuropathy (initially classified as idiopathic) is suspected to be of autoimmune origin because I have an autoimmune arthritis and I first started having symptoms 2 weeks after a very bad cold virus. For unknown reasons (like with covid) viral infections are suspected to flip a switch in the immune system.
I’ve also tested positive for something called the FGFR3 autoantibody. Research is being done to see if something like IVIG could treat or even “cure” it. But it’s nearly impossible to find a neurologist willing to look into this or attempt it. The neurologist who diagnosed me moved out of state.
So, at least in my situation there’s a potential biological explanation. I also have something called motor autonomic pain, which happens when the parts of the brain that manage the sensory and motor connections don’t communicate well with my peripheral nerves, causing pain. It’s thought that we can retrain them brain/CNS to communicate better. I am doing/have done PT geared toward this specific issue and my symptoms have improved.
I kind of see that as a potential cure…if there was a way to re-train the brain/nervous system to stop delivering the pain response. That’s kind of my pipe dream…
EMO-Two neurologists, one at Brown Neurology in RI, and a second opinion consultant at Mass. General surmised after numerous tests, that my poly neuropathy was probably an autoimmune reaction, either to spinal fusion surgery, anaesthesia, medication or infection unrelated to surgery. Both recommended iVIG infusions, along with continuing Aquatherapy and clinical PT at URI, our nearby state university.
I have noticed improvement in motion and strength in my legs, and glutes, also in my upper body and core, which helps me walk with a smoother gate on my walker, able to weight-bear more on my legs. Pain has calmed down over time, too.
So, with that experience I would encourage you to search out a neurologist who understands the connection between autoimmune causes of neuropathy and will order iVIG infusions to tamp down inflammation in your nerves. And continue with PT that will work on the brain, balance, muscle, nerve connections. Do what you can, and make sure you have a neurologist or two in your corner. We are there in the meantime.
I am recovering from sensory and motor peripheral neuropathy because the likely cause was identified as an autoimmune reaction provoked by the Covid vaccines and I then stopped the vaccines.
@gba, You will notice that we added a little to your discussion title so that members can find it better when searching and to better describe what your discussion is about.
My thoughts on the question is no, maybe or huh? Like my good friend Chris @artscaping my hope is sitting sometime in the future past my lifetime but hopefully available for others down the road using stem cell therapy. There is some progress being made on stem cell therapy for diabetic neuropathy that I think shows some promise but I'm not sure it's available yet. 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/. I attached my notes from a 2018 meeting of the Minnesota Neuropathy Association on Stem Cell Therapy for Neuropathy. It has a lot of links to reference material that might be interesting if not helpful to understand where we are at with Stem Cell Therapy and Neuropathy.
Hello @gba - You will notice that we removed your email address to protect your privacy since Connect is a public site and anyone can see the information.
You can easily change your email address in your Profile and Settings.
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Do you mean is neuropathy curable? In theory, if you can identify the root cause and the root cause is treatable, and can be treated before damage is done to the nerves…I suppose it could be curable, i.e. low B12 levels that cause neuropathy can be addressed.
But more than 30% of small fiber neuropathies (which is what I have) have no known cause. And even if we suspect the cause, there’s not a cure for my underlying conditions…
Which to me, brings it back to “treatable,” at least with the neuropathy I have.
I was diagnosed with idiopathic peripheral Neuropathy small sensory fiber. I have Multiple auto immune diseases and Mayo in Rochester decided most likely from Sjogrens Syndrome. Yeah I had a cause but there is still no cure and same treatment except for most part. Still it was good to finally get an answer.
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Do you mean is neuropathy curable? In theory, if you can identify the root cause and the root cause is treatable, and can be treated before damage is done to the nerves…I suppose it could be curable, i.e. low B12 levels that cause neuropathy can be addressed.
But more than 30% of small fiber neuropathies (which is what I have) have no known cause. And even if we suspect the cause, there’s not a cure for my underlying conditions…
Which to me, brings it back to “treatable,” at least with the neuropathy I have.
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1 Reaction@gba and @emo
This is undoubtedly the question of the century for many of us. I have spent quite a bit of my life trying to understand why neuropathy occurs and why it is not curable. I watched the Oppenheimer movie about the Atomic Bomb Sunday night. What a nightmare that became. Just being able to create a "bomb" did not cure anything about how to live together in harmony on what we are learning is quite a small planet that is at this point considered to be overpopulated by many.
So #1 is a search for the answer to "How do you get neuropathy?" Idiopathic does not satisfy our expectation that our medical community is expected to find the cause of all illnesses, diseases, and, conditions. I tested positive by biopsy for SFN. That means there just are not enough alive, healthy, and active nerves to do what they have been designed to do. We understand the damage done by prior conditions, and/or their treatments. I can imagine how the trauma in my life from surgeries and accidents put a temporary hold or slow down on the regenerative abilities of nerves that will be able to do their job consistently and painlessly.
Nerve regeneration is a long process. Can we speed it up with a medication or a treatment? It appears that today we run out of time on this "small" planet to wait for the regeneration process to give us healthy muscles that sit up and take notice quickly. The alternative is to deal with the pain messages that our brains generate in a way that focuses on "Quality of Life".
I would love to post a statement that screams....."Stem Cells now available for Neuropathy."
What I can do is applaud the efforts of all of you and other Connect members. You are sharing options with each other very generously. You are reporting the results of your "options" very openly and with the intent of informing. You all have the lifetime honor of becoming an "NLP" neuropathy leader of the pack.
May you all have happiness and the causes of happiness.
Chris
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Helpful -
Hug
13 ReactionsI agree. “Idiopathic” is one of my least favorite words related to chronic pain. In my head it’s translated to: “We don’t feel it’s worth the effort to try to figure it out.” And then it’s typically followed by the provider asking if I’ve ever tried Lyrica or gabapentin.
My small fiber neuropathy (initially classified as idiopathic) is suspected to be of autoimmune origin because I have an autoimmune arthritis and I first started having symptoms 2 weeks after a very bad cold virus. For unknown reasons (like with covid) viral infections are suspected to flip a switch in the immune system.
I’ve also tested positive for something called the FGFR3 autoantibody. Research is being done to see if something like IVIG could treat or even “cure” it. But it’s nearly impossible to find a neurologist willing to look into this or attempt it. The neurologist who diagnosed me moved out of state.
So, at least in my situation there’s a potential biological explanation. I also have something called motor autonomic pain, which happens when the parts of the brain that manage the sensory and motor connections don’t communicate well with my peripheral nerves, causing pain. It’s thought that we can retrain them brain/CNS to communicate better. I am doing/have done PT geared toward this specific issue and my symptoms have improved.
I kind of see that as a potential cure…if there was a way to re-train the brain/nervous system to stop delivering the pain response. That’s kind of my pipe dream…
-
Like -
Helpful -
Hug
4 Reactions@gba - When I first read your post, I immediately thought "no and no"...but then, it's more than that. I always enjoy posts by Chris Trout who has the ability to look at things from experience and various perspectives. The stem cell point is something that I feel has to be given a lot of consideration. Personally....I doubt anything can be curable until it is first treatable. As it stands, only about 8% of us have PN. Covid, cancer, heart disease and other things that can take our lives have taken center stage. And, think about this, when you tell someone, you have peripheral neuropathy, most people never heard of it and if they did, they got it wrong. First, figure out how to regenerate never damage and through treatment, you might just find the cure. So, I will revise my initial reaction to: Hopeful and possible. Thanks for bringing this up! Ed
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Like -
Helpful -
Hug
3 Reactions@gba, You will notice that we added a little to your discussion title so that members can find it better when searching and to better describe what your discussion is about.
My thoughts on the question is no, maybe or huh? Like my good friend Chris @artscaping my hope is sitting sometime in the future past my lifetime but hopefully available for others down the road using stem cell therapy. There is some progress being made on stem cell therapy for diabetic neuropathy that I think shows some promise but I'm not sure it's available yet. 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/. I attached my notes from a 2018 meeting of the Minnesota Neuropathy Association on Stem Cell Therapy for Neuropathy. It has a lot of links to reference material that might be interesting if not helpful to understand where we are at with Stem Cell Therapy and Neuropathy.
@emo if you are into neuroplasticity and retraining the brain, check out this discussion started by Barry @user_che214927:
--- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)
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5 ReactionsEMO-Two neurologists, one at Brown Neurology in RI, and a second opinion consultant at Mass. General surmised after numerous tests, that my poly neuropathy was probably an autoimmune reaction, either to spinal fusion surgery, anaesthesia, medication or infection unrelated to surgery. Both recommended iVIG infusions, along with continuing Aquatherapy and clinical PT at URI, our nearby state university.
I have noticed improvement in motion and strength in my legs, and glutes, also in my upper body and core, which helps me walk with a smoother gate on my walker, able to weight-bear more on my legs. Pain has calmed down over time, too.
So, with that experience I would encourage you to search out a neurologist who understands the connection between autoimmune causes of neuropathy and will order iVIG infusions to tamp down inflammation in your nerves. And continue with PT that will work on the brain, balance, muscle, nerve connections. Do what you can, and make sure you have a neurologist or two in your corner. We are there in the meantime.
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Helpful -
Hug
9 ReactionsI am recovering from sensory and motor peripheral neuropathy because the likely cause was identified as an autoimmune reaction provoked by the Covid vaccines and I then stopped the vaccines.
Please change my E Mail address *************** Thanks
Hello @gba - You will notice that we removed your email address to protect your privacy since Connect is a public site and anyone can see the information.
You can easily change your email address in your Profile and Settings.
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1 ReactionI was diagnosed with idiopathic peripheral Neuropathy small sensory fiber. I have Multiple auto immune diseases and Mayo in Rochester decided most likely from Sjogrens Syndrome. Yeah I had a cause but there is still no cure and same treatment except for most part. Still it was good to finally get an answer.
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4 Reactions