Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@roq

I'm 82 and had those tests done about three months ago. I was somewhat fearful and nervous leading up to the actual tests, but found there was nothing to worry about. Somewhat uncomfortable, true, but it goes pretty quickly and nothing that's "unbearable." Just do it.

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Hi @roq, welcome to Mayo Clinic Connect. Thank you for sharing your experience with the tests. Did the tests confirm a diagnosis?

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@steeldove

@memomsloan This might help:
Center for Peripheral Neuopathy The University of Chicago
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About Peripheral Neuropathy - Symptoms
What is Peripheral Neuropathy? | What Causes Peripheral Neuropathy? | Symptoms

3 TYPES OF PERIPHERAL NERVES
There are three types of peripheral nerves: motor, sensory and autonomic. Some neuropathies affect all three types of nerves, while others involve only one or two.

3 Types of Peripheral Nerves:

Motor
Sensory
Autonomic
Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps, and spasms.

Sensory nerves send messages in the other direction—from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth, if it's hot or cold, or if a body part is still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch.

Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person's heart may beat faster or slower. They may get dizzy when standing up, sweat excessively, or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction.

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Well, I have all three types. I have a spinal cord injury at T 7. I am paralyzed from my waist down. I had five years of intensive therapy and can “walk” a short distance in a walker, but after that, I fall a lot. I have a spinal cord stimulator for pain but it only helps a little bit. I use gabapentin 600 mg every six hours and tizanidine for spasms. I have neuropathy 24/7 and when it gets too bad, I put ice packs on my legs and hips to get some relief. My life totally changed when I became paralyzed with a spinal cord stroke. I never gave up and learned to drive our big suv with hand controls. I can take care of myself at home, but I really miss walking around the house. I am confined to my wheelchair because I fall too much.

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@darlingtondoll

Well, I have all three types. I have a spinal cord injury at T 7. I am paralyzed from my waist down. I had five years of intensive therapy and can “walk” a short distance in a walker, but after that, I fall a lot. I have a spinal cord stimulator for pain but it only helps a little bit. I use gabapentin 600 mg every six hours and tizanidine for spasms. I have neuropathy 24/7 and when it gets too bad, I put ice packs on my legs and hips to get some relief. My life totally changed when I became paralyzed with a spinal cord stroke. I never gave up and learned to drive our big suv with hand controls. I can take care of myself at home, but I really miss walking around the house. I am confined to my wheelchair because I fall too much.

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Hi @darlingtondoll, I have a friend that is a Vietnam Vet and has a back injury that keeps him from walking much. He has a wheelchair with tracks that lets him go on any terrain. He takes it when he goes hunting or if he and his wife go out for a hike. Not sure what they cost but it has given him some freedom and outdoors enjoyment. Several companies make them now. Here are a couple of examples.

https://www.tracfab.com/
http://www.unitedspinal.org/disability-products-services/action-trackchair

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That device looks fabulous. I have a special golf cart that is made in Texas and permits me to play again. I played before I was paralyzed for 40 years. Now I have to learn how to play again while strapped into this cart.

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@darlingtondoll

That device looks fabulous. I have a special golf cart that is made in Texas and permits me to play again. I played before I was paralyzed for 40 years. Now I have to learn how to play again while strapped into this cart.

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You GO girl! Impressive.

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I have read the Connect posts to this question posed by @rabbit10 from April 2016 to Sept 2018 (the point where I am now) and I have to say my heart goes out to all you pain sufferers. PN is a horrible affliction. And so many try drugs and are disappointed (except a very few). My wife Linda has had PN since her chemo in 2014. I have been her caregiver since then. It happened just after the 2nd round and at that point she decided to quit chemo. After 4 occurences of breast cancer and surgeries for same over 3 years (2012-2015) she finally arrested it herself by taking Haelan951 (easily fouund online, it is a miracle for cancer of all kinds). She has since had no new outbreaks for over 4 years, to the surprise of her favorite Vanderbilt cancer surgeon.
Anyway, the neuropathy is now her biggest issue. She gets burning feet every day. Periodically she also gets a deep, insanely intense deep itch. She has found significant relief from the itch using a Sonicare electric toothbrush, the vibrations from which get down deep to that itch. But we think that the itch issue may be more from fibromyalgia and perhaps not neuropathy, but who knows and anyway its all nerve-related, right? For the burning she uses a fan blowing on her feet and she must keep the air conditioning at 66 degrees in the summer or she suffers (she loves winter now). She maintains a clean diet and takes a lot of supplements, including a lot of the ones everyone recommends for PN (R Lipoic, Benfo Thiamine, Acetyl L Carnitine, Omega 7 and at least 2 dozen more). She does not excercise much though she knows she should. She just doesn't have any energy most of the time. In doing research online there are a couple things I have found that sounded promising but which we have not been able to try. One is tetradotoxin, which is a substance taken from a pufferfish and is showing promise in relieving PN for up to 10 or 12 weeks at a time. Last I heard it was in phase 3 trials. I communicated with someone working on the study who said it could be years before final FDA approval, but it does sound promising. Search tertrodotoxin for peripheral neuropathy to see links referring to this. Here is one by the company developing it:

http://www.wextech.ca/pdf/poster/24-AAN%202016%20SAG.pdf

Another thing I came across at one point was Calmere Scramble therapy. It is a device, developed in Italy, that seems to arrest or reduce PN pain after a 2 week treatment regimen. The problem with it is that the device costs over $100 thousand dollars. There are a few medical facilities that have the device and offer this treatment around the country (we don't live near any of them) but I found one place in W. Hartford, Ct. that say they will do it for around $5000 but you would also have the cost of staying there for 2-3 weeks. And if it lasts 10-12 weeks it means you would need to return for further treatments. But apparently some people have sworn it has helped them. Here is a link:

http://calmarett.com/

Another thing we got for Linda is an Infrared light, well two different ones, actually. She used them on her feet for a couple months but stopped after she upped her sessions from 15 minutes to 20 minutes and felt she was getting burned. So this has not turned out to be too promising as yet.

Linda would like to try medical marijauna but it is illegal in Tennessee right now. Hopefully that will change soon. She has tried cbd oil and has also tried kratom, but has not been helped by either.

After reading through the first 68 pages of this website, one thing that sounds promising to us is Bob Diamond's protocol on Facebook which @johnbishop has mentioned. My wife wants to try this out soon. The only thing that worries Linda is the high (1200mg/day) dose of r-lipoic in the protocol. She has trouble tolerating the 240mg Life Extension pill she takes now, as it makes her nauseous. But she is going to give it a try anyway. She is so ready (as am I) for her to be able to have her life back. She is unable to travel to see my 98 year old mother whom she loves because of this ridiculous problem. She wants to be able to get out and do things again. She knows she is better off than many who suffer from PN but it's not any fun for anyone. If I find out anything new in my own research of PN I will let you all know about it. Best wishes to everyone.

REPLY
@jesfactsmon

I have read the Connect posts to this question posed by @rabbit10 from April 2016 to Sept 2018 (the point where I am now) and I have to say my heart goes out to all you pain sufferers. PN is a horrible affliction. And so many try drugs and are disappointed (except a very few). My wife Linda has had PN since her chemo in 2014. I have been her caregiver since then. It happened just after the 2nd round and at that point she decided to quit chemo. After 4 occurences of breast cancer and surgeries for same over 3 years (2012-2015) she finally arrested it herself by taking Haelan951 (easily fouund online, it is a miracle for cancer of all kinds). She has since had no new outbreaks for over 4 years, to the surprise of her favorite Vanderbilt cancer surgeon.
Anyway, the neuropathy is now her biggest issue. She gets burning feet every day. Periodically she also gets a deep, insanely intense deep itch. She has found significant relief from the itch using a Sonicare electric toothbrush, the vibrations from which get down deep to that itch. But we think that the itch issue may be more from fibromyalgia and perhaps not neuropathy, but who knows and anyway its all nerve-related, right? For the burning she uses a fan blowing on her feet and she must keep the air conditioning at 66 degrees in the summer or she suffers (she loves winter now). She maintains a clean diet and takes a lot of supplements, including a lot of the ones everyone recommends for PN (R Lipoic, Benfo Thiamine, Acetyl L Carnitine, Omega 7 and at least 2 dozen more). She does not excercise much though she knows she should. She just doesn't have any energy most of the time. In doing research online there are a couple things I have found that sounded promising but which we have not been able to try. One is tetradotoxin, which is a substance taken from a pufferfish and is showing promise in relieving PN for up to 10 or 12 weeks at a time. Last I heard it was in phase 3 trials. I communicated with someone working on the study who said it could be years before final FDA approval, but it does sound promising. Search tertrodotoxin for peripheral neuropathy to see links referring to this. Here is one by the company developing it:

http://www.wextech.ca/pdf/poster/24-AAN%202016%20SAG.pdf

Another thing I came across at one point was Calmere Scramble therapy. It is a device, developed in Italy, that seems to arrest or reduce PN pain after a 2 week treatment regimen. The problem with it is that the device costs over $100 thousand dollars. There are a few medical facilities that have the device and offer this treatment around the country (we don't live near any of them) but I found one place in W. Hartford, Ct. that say they will do it for around $5000 but you would also have the cost of staying there for 2-3 weeks. And if it lasts 10-12 weeks it means you would need to return for further treatments. But apparently some people have sworn it has helped them. Here is a link:

http://calmarett.com/

Another thing we got for Linda is an Infrared light, well two different ones, actually. She used them on her feet for a couple months but stopped after she upped her sessions from 15 minutes to 20 minutes and felt she was getting burned. So this has not turned out to be too promising as yet.

Linda would like to try medical marijauna but it is illegal in Tennessee right now. Hopefully that will change soon. She has tried cbd oil and has also tried kratom, but has not been helped by either.

After reading through the first 68 pages of this website, one thing that sounds promising to us is Bob Diamond's protocol on Facebook which @johnbishop has mentioned. My wife wants to try this out soon. The only thing that worries Linda is the high (1200mg/day) dose of r-lipoic in the protocol. She has trouble tolerating the 240mg Life Extension pill she takes now, as it makes her nauseous. But she is going to give it a try anyway. She is so ready (as am I) for her to be able to have her life back. She is unable to travel to see my 98 year old mother whom she loves because of this ridiculous problem. She wants to be able to get out and do things again. She knows she is better off than many who suffer from PN but it's not any fun for anyone. If I find out anything new in my own research of PN I will let you all know about it. Best wishes to everyone.

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It is very nice to hear your input . You are obviously very dedicated to your wife to read through all those posts! Thank you for sharing your thoughts and her experiences with us. Welcome to you and many well wishes to Linda.
Rachel

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@jesfactsmon

I have read the Connect posts to this question posed by @rabbit10 from April 2016 to Sept 2018 (the point where I am now) and I have to say my heart goes out to all you pain sufferers. PN is a horrible affliction. And so many try drugs and are disappointed (except a very few). My wife Linda has had PN since her chemo in 2014. I have been her caregiver since then. It happened just after the 2nd round and at that point she decided to quit chemo. After 4 occurences of breast cancer and surgeries for same over 3 years (2012-2015) she finally arrested it herself by taking Haelan951 (easily fouund online, it is a miracle for cancer of all kinds). She has since had no new outbreaks for over 4 years, to the surprise of her favorite Vanderbilt cancer surgeon.
Anyway, the neuropathy is now her biggest issue. She gets burning feet every day. Periodically she also gets a deep, insanely intense deep itch. She has found significant relief from the itch using a Sonicare electric toothbrush, the vibrations from which get down deep to that itch. But we think that the itch issue may be more from fibromyalgia and perhaps not neuropathy, but who knows and anyway its all nerve-related, right? For the burning she uses a fan blowing on her feet and she must keep the air conditioning at 66 degrees in the summer or she suffers (she loves winter now). She maintains a clean diet and takes a lot of supplements, including a lot of the ones everyone recommends for PN (R Lipoic, Benfo Thiamine, Acetyl L Carnitine, Omega 7 and at least 2 dozen more). She does not excercise much though she knows she should. She just doesn't have any energy most of the time. In doing research online there are a couple things I have found that sounded promising but which we have not been able to try. One is tetradotoxin, which is a substance taken from a pufferfish and is showing promise in relieving PN for up to 10 or 12 weeks at a time. Last I heard it was in phase 3 trials. I communicated with someone working on the study who said it could be years before final FDA approval, but it does sound promising. Search tertrodotoxin for peripheral neuropathy to see links referring to this. Here is one by the company developing it:

http://www.wextech.ca/pdf/poster/24-AAN%202016%20SAG.pdf

Another thing I came across at one point was Calmere Scramble therapy. It is a device, developed in Italy, that seems to arrest or reduce PN pain after a 2 week treatment regimen. The problem with it is that the device costs over $100 thousand dollars. There are a few medical facilities that have the device and offer this treatment around the country (we don't live near any of them) but I found one place in W. Hartford, Ct. that say they will do it for around $5000 but you would also have the cost of staying there for 2-3 weeks. And if it lasts 10-12 weeks it means you would need to return for further treatments. But apparently some people have sworn it has helped them. Here is a link:

http://calmarett.com/

Another thing we got for Linda is an Infrared light, well two different ones, actually. She used them on her feet for a couple months but stopped after she upped her sessions from 15 minutes to 20 minutes and felt she was getting burned. So this has not turned out to be too promising as yet.

Linda would like to try medical marijauna but it is illegal in Tennessee right now. Hopefully that will change soon. She has tried cbd oil and has also tried kratom, but has not been helped by either.

After reading through the first 68 pages of this website, one thing that sounds promising to us is Bob Diamond's protocol on Facebook which @johnbishop has mentioned. My wife wants to try this out soon. The only thing that worries Linda is the high (1200mg/day) dose of r-lipoic in the protocol. She has trouble tolerating the 240mg Life Extension pill she takes now, as it makes her nauseous. But she is going to give it a try anyway. She is so ready (as am I) for her to be able to have her life back. She is unable to travel to see my 98 year old mother whom she loves because of this ridiculous problem. She wants to be able to get out and do things again. She knows she is better off than many who suffer from PN but it's not any fun for anyone. If I find out anything new in my own research of PN I will let you all know about it. Best wishes to everyone.

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@jesfactsmon Hi Hank, So sorry about you and your wife. So hard on both of you. I have severe peripheral neurapathy in my feet, with throbbing, burning, stabbing, contorting...on and on. Just to let you know, I have tried Scrambler therapy here in Illinois. It was 150.00 per treatment, for 10 treatments. Although it helped, it only did so for about 3 weeks. The second round of scrambler therapy barely helped at all. However, I know that people from all over the country come to this Illinois clinic, as the man who does it has good success. It is Spero Clinic of Illinois. There is only one Scrambler/Calmare therapy clinic in Illinois, and he is the one. As far as Kratom, go to Happyhippoherbals.com and try their Slow Strain Kratom. It does work for pain, and is approved by the American Kratom Association. Kratom is not created equal, by any means. There are strains that do utterly nothing. But the slow strains of Kratom, from Happy Hippo, do work. Especially if they note it for body relief, or any reference to making the body feel better. They never claim that Kratom helps with pain, I think for legal reasons. I find Kratom to be the best pain reliever. Not the capsules. The disgusting, vile tasting powder. It is the real deal, and works. Just thought this might help you. This illness is just a bear. Has totally disabled me. Pisses me off terribly. Makes me terribly sad. Mine started right after breast cancer also, but I never had chemo. I only had radiation. Go figure. Anyway, best of luck...… Lori Renee

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Thanks Lori, it seems like we are on a never ending Merry-go-round of pursuing one seemingly promising "solution" after the next. We are currently onto this Facebook group's Protocol of supplements, waiting for them to release their all-in-one package of all the required pills which have supposedly helped some people. One thing Linda won't do, and I am behind her 100% is drugs. The only drug she has tried so far for PN is gabapentin and that did not help, while giving her some unpleasant side effects like dizziness, foggy brain and others. She did not like the kratom I got for her and still has most of it. I can't find the link to who I ordered it from. Will keep your suggestion of Happyhippoherbals for the next time the Merry-go-round brings us back to kratom though as I find its always good to keep doors open and never close one 'cause you never know, someday something you thought never would might end up being the answer. Thanks again. Hank

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@jesfactsmon

Thanks Lori, it seems like we are on a never ending Merry-go-round of pursuing one seemingly promising "solution" after the next. We are currently onto this Facebook group's Protocol of supplements, waiting for them to release their all-in-one package of all the required pills which have supposedly helped some people. One thing Linda won't do, and I am behind her 100% is drugs. The only drug she has tried so far for PN is gabapentin and that did not help, while giving her some unpleasant side effects like dizziness, foggy brain and others. She did not like the kratom I got for her and still has most of it. I can't find the link to who I ordered it from. Will keep your suggestion of Happyhippoherbals for the next time the Merry-go-round brings us back to kratom though as I find its always good to keep doors open and never close one 'cause you never know, someday something you thought never would might end up being the answer. Thanks again. Hank

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Hank, I can't tell you the money I have wasted on supposed relief from Neuropathy. But I continue to try things as I hear about them, for living with daily severe pain is hard work! You said you won't use drugs, but I am not sure what that entails. I went to my first medical marijuana dispensary today, and I do know that marijuana helps distance or take away pain. However, I do not enjoy the "high" feelings of being high, just to get rid of pain. I totally would understand if marijuana would not work for you. It is not something I am too nuts about having to use. But sometimes, the pain is too much! We are all searching here! Good luck in finding things to help the Neuropathy battle! Lori R.

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