Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@bruce2666

Hi John. I have idiopathic non diabetic small fiber PN. Have even been to Duke and Emory and diagnosis confirmed my Neurologist diagnosis. I have pain only in my feet and ankles which has progressed since diagnosed in 2003 but much worse in last year. I take lyrica and tramodol as needed. I don’t want to get on opioids. They scare me. Have tried anodyne and laser treatments but only gives temporary relief. What are the supplements that you are taking which are helping you? Thanks. Bruce

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Hi Bruce @bruce2666, the supplements I take are listed with links to purchase them on the groups website I posted about above your post here: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=74#comment-290318

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I have autonomic neuropathy, which affects every system in my body. I have a bunch of questions. Does anyone know if this is curable? Is the best we can do to slow or stop the progress of the damage? I know nerves can regenerate over time, but how much and how long does it take?
I feel I am getting mixed messages from different doctors. Thank you to everyone that has any information for me.

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@2011panc

I have autonomic neuropathy, which affects every system in my body. I have a bunch of questions. Does anyone know if this is curable? Is the best we can do to slow or stop the progress of the damage? I know nerves can regenerate over time, but how much and how long does it take?
I feel I am getting mixed messages from different doctors. Thank you to everyone that has any information for me.

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Hello @2011panc, I have no medical training or background but believe some forms of neuropathy may be curable, for example, a nerve that is compressed can cause neuropathy. Remove the reason for the nerve compression and the neuropathy may go away. Here's an article I found that may help with your question. Maybe others have thoughts or information also, so hoping they join in and share their experiences or knowledge.

Autonomic Neuropathy is Treatable
https://www.touchendocrinology.com/autonomic-neuropathy-is-treatable/

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@2011panc

I have autonomic neuropathy, which affects every system in my body. I have a bunch of questions. Does anyone know if this is curable? Is the best we can do to slow or stop the progress of the damage? I know nerves can regenerate over time, but how much and how long does it take?
I feel I am getting mixed messages from different doctors. Thank you to everyone that has any information for me.

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I am also not a doctor but the way nerve regrowth was described to me is that nerves can repair some damage. However the complete death of a nerve is final and cannot be regrown. In other words if you still have some feeling then if the cause of the loss is removed, the nerve can repair and restore. If the feeling is completely gone then the nerves are gone and will not be able to recover.

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@johnhans

I am also not a doctor but the way nerve regrowth was described to me is that nerves can repair some damage. However the complete death of a nerve is final and cannot be regrown. In other words if you still have some feeling then if the cause of the loss is removed, the nerve can repair and restore. If the feeling is completely gone then the nerves are gone and will not be able to recover.

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Interesting!

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@johnhans

I am also not a doctor but the way nerve regrowth was described to me is that nerves can repair some damage. However the complete death of a nerve is final and cannot be regrown. In other words if you still have some feeling then if the cause of the loss is removed, the nerve can repair and restore. If the feeling is completely gone then the nerves are gone and will not be able to recover.

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@johnhans….thank you. I did not know this. Love to learn more about my issues. Neuropathy being a big one. With trigeminal neuralgia, I presume because the nerve is firing off, though all wrong, it can heal itself. But, it's been damaged for 7 years and has not repaired itself. I always thought it had been nicked during a neck disection to remove a tumor, but now I wonder if it isn't compression. Seems if it had been a nick, it's had plenty of time to repair itself.Thanks again for the info.

I also have toes with little to no sensation. I could shove a needle into the end of a couple and feel pressure but no pain. Its not the entire toe, just the ends. I would love for them to regenerate. And no, i am not diabetic. Seems just plain ole nerve damage. But…There still must me some function, because the slightest bump sends pain, much exagerated, to my brain.

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Good morning.
I have just been diagnosed as haven't neuopathy in the feet. This started over last Christmas when I thought I just had cold feet.
I have been a pre diobetic since 2014 with a A1C of 5.9-6.0. as my finals are all good and my BMI is good no treatment plan was seen necessary by my Dr except test for A1C perhaps twice or three times a year.
My last A1C test before January of this year was was in March 2018 when it was 6 and glucose levet 125.
Due to my cold feet I went to see my Dr for another A1C test and the result was 6.9.
The Dr started me on Metforman 500mg 2 a day. He did not believe I had neuopathy due to diabetes as in his view I had not had it long enough.
My glucose levels was 154.
I went to see a Neurologist and he confirmed after tests that I had neuopathy in the feet and gave me Gabapentin , now taking 6 100mg a day but the tingling in my feet is I think the same as it was.
.y question is what can I do. I play tennis and pickle ball , am 78 years old and this sucks.
.y thanks to all in advance.

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@johnbishop

Hi Bruce @bruce2666, the supplements I take are listed with links to purchase them on the groups website I posted about above your post here: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=74#comment-290318

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Site is complicated and could not find a list.

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@daviddd

Site is complicated and could not find a list.

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@daviddd — Did you read the instructions page? It has a list of what to take in the morning, at noon and the evening. The ordering page is confusing because they have multiple links for ordering each product depending on if you are in the USA, UK or Canada. But each item is listed next to the numbers 1, 2, 3, 4…etc. with the order links below the item. I would not just order and take the protocol. You need to read all of the new member welcome message in the Facebook group so that you understand how it helps you. They have a lot of research information in the files section of the group. I would discuss it with your doctor which is what I did before starting.

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@johnbishop

@daviddd — Did you read the instructions page? It has a list of what to take in the morning, at noon and the evening. The ordering page is confusing because they have multiple links for ordering each product depending on if you are in the USA, UK or Canada. But each item is listed next to the numbers 1, 2, 3, 4…etc. with the order links below the item. I would not just order and take the protocol. You need to read all of the new member welcome message in the Facebook group so that you understand how it helps you. They have a lot of research information in the files section of the group. I would discuss it with your doctor which is what I did before starting.

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Thanks I will try again.

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I have several nerve related problems in my legs and feet and I don't know what is what. Years ago I had 2 biopsies done on my left leg that showed small fiber neuropathy. No treatment was offered. Next came a burning right foot that had had 3 surgeries, the second one was messed up, the third removed screws and plates that were too big for my foot and had caused a lot of pain, Four years after that I was dx with CRPS. The burning and pain was ridiculous as was the edema and shiny red skin. That moved to my left foot , left knee, and immediately after my second spinal cord stimulator was implanted, to my left butt due to being injured from being tossed around on the operating table called a Jackson table. That pain far outshown the surgery! So I would like to hear from someone who may just have severe sensorymotor polyneuropathy to help me sort out what is what.

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@barbbie

I have several nerve related problems in my legs and feet and I don't know what is what. Years ago I had 2 biopsies done on my left leg that showed small fiber neuropathy. No treatment was offered. Next came a burning right foot that had had 3 surgeries, the second one was messed up, the third removed screws and plates that were too big for my foot and had caused a lot of pain, Four years after that I was dx with CRPS. The burning and pain was ridiculous as was the edema and shiny red skin. That moved to my left foot , left knee, and immediately after my second spinal cord stimulator was implanted, to my left butt due to being injured from being tossed around on the operating table called a Jackson table. That pain far outshown the surgery! So I would like to hear from someone who may just have severe sensorymotor polyneuropathy to help me sort out what is what.

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Hi, @barbbie – You may notice I moved your discussion and combined it with another discussion titled, "Living with Neuropathy – Welcome to the group." I did this so many members on Connect discussing neuropathy would see your message and have a chance to add their thoughts. Hoping some of the members here, particularly those with sensorimotor polyneuropathy, will chime in with some support and help in sorting out what is what with the nerve-related problems in your legs and feet.

@barbbie – what pain or burning issues are plaguing you the most right now? Are these issues constant, or do they come and go?

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@lisalucier

Hi, @barbbie – You may notice I moved your discussion and combined it with another discussion titled, "Living with Neuropathy – Welcome to the group." I did this so many members on Connect discussing neuropathy would see your message and have a chance to add their thoughts. Hoping some of the members here, particularly those with sensorimotor polyneuropathy, will chime in with some support and help in sorting out what is what with the nerve-related problems in your legs and feet.

@barbbie – what pain or burning issues are plaguing you the most right now? Are these issues constant, or do they come and go?

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My burning pain right now, which I think is CRPS, is in the ball of my right foot and the lower back of my numb neck. The foot pain moves around. My neck has been numb for a little over six weeks. My feet were red and swollen when I got up. My ankles were also filled with edema. I just saw a different osteopath who told me my whole nervous system appears to be hyperactive. That alone can cause a lot of weird things. Thanks for switching this over to the current category.

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@barbbie

My burning pain right now, which I think is CRPS, is in the ball of my right foot and the lower back of my numb neck. The foot pain moves around. My neck has been numb for a little over six weeks. My feet were red and swollen when I got up. My ankles were also filled with edema. I just saw a different osteopath who told me my whole nervous system appears to be hyperactive. That alone can cause a lot of weird things. Thanks for switching this over to the current category.

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Hi @barbbie, have you seen the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website? It has some good information on CRPS Treatment that might be helpful.

https://rsds.org/treatment/

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@johnbishop

Hi @barbbie, have you seen the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website? It has some good information on CRPS Treatment that might be helpful.

https://rsds.org/treatment/

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Thanks for the referral. I learned some useful info.

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