I would like to add my welcome to @kanaazperia's. This is a great place to share and gather information.
Here's my story - I've been living with peripheral neuropathy (PN) for 20+ years which started in my toes with tingling and numbness and eventually worked it's way up to just below my knees in both legs. I am fortunate that I only have numbness/tingling with my PN and no pain like a majority of people - it's still bad. In the early years I had mentioned it to my primary care doctor who said it was probably nerve damage and they could run some tests to find out. I asked if they found it was nerve damage what could be done to fix it. When he told me nothing I opted to not have the tests - my mistake. It's always better to get an accurate diagnosis. In March 2016 I decided to get a diagnosis and before I could meet with a neurologist my doctor had me get 2 MRIs and and EMG. When I met with the neurologist his diagnosis was idiopathic small fiber peripheral neuropathy (SFPN) and the downer was when he told me there are no topicals or drugs that help with numbness. They can only help with pain, basically by blocking the pain signal to brain (my words). None of the currently available drugs being prescribed for PN do anything to fix or repair the damaged nerves, they only mask the pain.
This started my journey learning how to be my own advocate by doing my own research and learning as much as I can about my condition. In April 2016 I found the Minnesota Neuropathy Association (MNA) and started going to their monthly meetings and interacting with others sharing how they are dealing with PN. This helped me realize how many people are affected and that what works for some people doesn't always work for others. I've looked into several of the large peripheral neuropathy centers that offer treatments but they are extremely expensive (IMHO) and not generally covered by insurance. I know a few people who have received treatments at the centers and feel like it has helped them but I didn't get any comfort that they could help me. I've tried a tens unit which others in the MNA had tried after a company rep gave a presentation at a meeting - Zopec DT-1200 which is specifically made to help with neuropathy. After a few months of using it twice daily for 30 minutes there were times when I thought my feet felt better but really couldn't tell.
The most important lesson that i have learned by being my own advocate is that there are a lot of people making money off of the suffering of people with peripheral neuropathy. I am not a doctor and have had no medical training so the only tool I have on my side is to educate myself and avoid scams and snake oils which can be challenging at times because everyone is looking for one magic pill or drug to make it all go away. Here are a few sites that can help you make a determination and how to avoid a scam:
Controversies exists in the world of complementary and alternative medicine. What appears to be working for you, may not work for others. Warnings for potential scams and guidance about avoiding scams and snake oil cures: http://mayocl.in/2gcdDNt
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it. https://nccih.nih.gov/health/decisions
I have found a solution that works for me and has also worked for quite a few others with peripheral neuropathy. I don't know if it will work for you but I can share what it's done for me. When I started doing my research and received my diagnosis the numbness from my SFPN was in both legs from just below the knees down through the toes - my biggest concern was losing the ability to drive. I started taking a specific protocol of supplements (after discussing them with my doctor who shared the list with the Mayo pharmacist) in September 2016 and started seeing results within a few months around December 2016. Now the numbness appears to be just above my ankles instead of just below the knees. I haven't made any more progress so the numbness may never completely go away for me. I am OK with that because it means it has stopped the progression of the numbness which is a big deal for me.
I was a little skeptical at first when I found this closed group on Facebook. But I have tried a lot of things and had pretty much exhausted my options so I joined the group in August 2016. After reading all the material they have available, listening to group discussion videos and interacting in the Facebook group I decided to try the protocol being used by the group and I am happy I did. If you want more information, I would suggest joining the closed Facebook group and deciding for yourself - https://www.facebook.com/groups/952340464830989/. Once you have joined and read through the welcome new member information I would recommend searching the group by going to the top and clicking the search icon and typing #theprotocolworks and do a search of the group. This will bring up all the messages by members who are sharing how the protocol has helped them get their life back and eliminate the need to take pain drugs for the PN. The only instance I am aware of that the supplements will not help to repair a damaged nerve is when the damage is catastrophic - nerves crushed, torn by an accident, surgery or other condition which I learned through reading, listening to the group discussions.
I hope you all find and answer and solution that works for you.
My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.
The way I cope is to do my best to ignore the numbness. There is no relief. There is plenty of snake oil spread in the cancer community: baking soda cures, reiki, acupuncture, Chinese herbs, essential oils, homeopathy. Yes, they could work for some. Placebo effects are powerful. That's why the gold standard when testing if a treatment is safe *and* effective is a double blind clinical study where the treatment beats the placebo. I looked at the FB group and the protocol doesn't meet that standard. And no given the placebo effect "it worked for me" doesn't cut it, especially when you're telling people to wean themselves off their medications before starting.
My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.
I have CIDP, newly diagnosed, so i am not much help but curious if anyone knows what can help the numbness in feet. Tired of falling down due to not feeling things.
The way I cope is to do my best to ignore the numbness. There is no relief. There is plenty of snake oil spread in the cancer community: baking soda cures, reiki, acupuncture, Chinese herbs, essential oils, homeopathy. Yes, they could work for some. Placebo effects are powerful. That's why the gold standard when testing if a treatment is safe *and* effective is a double blind clinical study where the treatment beats the placebo. I looked at the FB group and the protocol doesn't meet that standard. And no given the placebo effect "it worked for me" doesn't cut it, especially when you're telling people to wean themselves off their medications before starting.
It's good to be skeptical but from your post I don't believe you actually read everything in the instructions which do not tell people to "wean" themselves off of the medications before starting. In fact it specifically says to not do it before you are on the full protocol and to work with your doctor if you have any questions. It works for me does cut it when the me is me. Granted it may not work for everyone but there are over 4000 members in the group and many that were bedridden and now have their life back and no longer have to take drugs that just mask the pain and come with their own set of problems.
There is no standard when it comes to peripheral neuropathy and if you think there is I would be interested in learning more as I have never seen one. Cymbalta, Lyrica and all the drugs that treat pain do it by masking the pain and do zero to address the problem that causes the pain - nerve damage. The longer you have the condition, the more the drugs cause additional problems and/or you keep having to up the dosage. So when left with a choice - drugs that mask the pain or a chance with something natural - minerals, vitamins, herbs and nutritional supplements that help your body heal on a cellular level, I will always keep an open mind to trying it.
The whole point of me sharing my story was to tell folks what works for me. Try it if you like, don't try it, but always do your own research and discuss it with your doctor. I am glad you are able to copy by ignoring the numbness. That's not an option for me as eventually the numbness aka nerve damage left to run it's course will get to where it affects the motor nervous system and the systems will get worse. Which is why my neurologist last words to me was let me know if it gets worse.
@lindy1956, here is a link to detailed information about Guillain-Barré syndrome, from Mayo Clinic: http://mayocl.in/1jEmzFG
You may also be interested in this video about a patient with Guillain-Barre syndrome, who was treated successfully and with rehabilitation has full mobility back again: http://bit.ly/2oVULD6
I hope @lolla, who had posted about her daughter diagnosed with this condition, will return with some insight, too. You can view that discussion here:
My daughter suffers from Guillain-Barre syndrome: http://mayocl.in/2nXTyKM
@cintam, could you tell us a bit ore about Probita? What is it, and how has it helped you?
Hi, my name is Cindy and I just joined after my sister in law sent me this link. I have had 6 back surgeries and the last being a 7 level fusion. The surgery went well (Finally!) but one of the trade offs was peripheral Nueropathy. I have to sleep in the recliner and that is when I am able to sleep. There are nights all I do is walk around my bedroom because my feet are so bad all I want to do is cut them off. I tried everything that I know of, some of which are Norontin, Lirica, (sorry for my spelling) I spent over $3,000 for a special therapy that did not work. I spent $1,500 for a special infrared boot. (Thank god my husband is so supportive and willing to do anything to help me) The only thing that gives me relief is the Methadone that I have for my back which I honestly can do without (for my back). I even went to the point of getting a medical Marijuana license for pot but really do not like the feeling of being high so I have not really used it. What have some of the things others here have tried that worked. I know there is no cure for this. My symptoms are the feeling as though my circulation has stopped, feels like I have really tight socks on even when I don't have socks on.
I would be very interested in your stories and solutions. Thanks in advance!
I deal with post surgical neuropathy. There has been no pain relief & narcotics did not relieve any of the pain only gave me a fuzzy head. I've been offered medical marijuana as an option but cannot afford it. Others have suggested Kratom which I am seriously considering.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
I have chemo induced neuropathy which began just after my 2nd taxol treatment. I finished treatment January 7, 2007 and the CIN (diagnosed by MGM at Mayo) has become progressively worse ... affecting my feet and legs from toe to groin and also the 1st joint of my fingers. I'm lucky I don't have the shooting pains, but it's difficult to walk without falling when you can't feel your feet.
I had 15 treatments of laser IV therapy and soft tissue massage last summer which helped and have kept up with the maintenance visits. I have also followed that up with PT at a very. very good facility. I can walk about 100 feet unaided and probably twice or times that far with a walking stick of trekking poles - without falling, but not necessarily without pain in my ankles and thighs. I'm hoping to get an Rx for a Rollator with a seat today so that I can handle greater distances. It really limits my mobility when I can't stand a few minute unaided to talk to someone, stand in line for groceries, a movie etc.
I have high hopes that the Rollator will let me walk farther and longer safely so that my legs get stronger and I can start doing more things including working in my 8 x 100 foot perennial garden.
I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome. I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.
I have autonomic neuropathy as well as chemo induced peripheral neuropathy in my toes to my groin and also in the 1st digit of of my fingers. My endocrinologist surspect that I have Sjogren's syndrome in addition to Hashimotos thyroiditis. My worst problem is also numbness which has gotten much worse in the last couple of years which really affects my ability to anything that involves standing on my feete because of very poor balance. I have gotten some help with Laser IV treatments together with soft tissue massage and regular PT. I'm hoping to purchase a Rollator with a seat so that I can get outside and walk more. .. hoping it will at least strengthen my legs so that I can go further, stand in lines, etc.
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Hello @tjjc123, @jkstrawther, @bod8shs, @hoot, @lisamaria, @materk, @alexandria56,
I would like to add my welcome to @kanaazperia's. This is a great place to share and gather information.
Here's my story - I've been living with peripheral neuropathy (PN) for 20+ years which started in my toes with tingling and numbness and eventually worked it's way up to just below my knees in both legs. I am fortunate that I only have numbness/tingling with my PN and no pain like a majority of people - it's still bad. In the early years I had mentioned it to my primary care doctor who said it was probably nerve damage and they could run some tests to find out. I asked if they found it was nerve damage what could be done to fix it. When he told me nothing I opted to not have the tests - my mistake. It's always better to get an accurate diagnosis. In March 2016 I decided to get a diagnosis and before I could meet with a neurologist my doctor had me get 2 MRIs and and EMG. When I met with the neurologist his diagnosis was idiopathic small fiber peripheral neuropathy (SFPN) and the downer was when he told me there are no topicals or drugs that help with numbness. They can only help with pain, basically by blocking the pain signal to brain (my words). None of the currently available drugs being prescribed for PN do anything to fix or repair the damaged nerves, they only mask the pain.
This started my journey learning how to be my own advocate by doing my own research and learning as much as I can about my condition. In April 2016 I found the Minnesota Neuropathy Association (MNA) and started going to their monthly meetings and interacting with others sharing how they are dealing with PN. This helped me realize how many people are affected and that what works for some people doesn't always work for others. I've looked into several of the large peripheral neuropathy centers that offer treatments but they are extremely expensive (IMHO) and not generally covered by insurance. I know a few people who have received treatments at the centers and feel like it has helped them but I didn't get any comfort that they could help me. I've tried a tens unit which others in the MNA had tried after a company rep gave a presentation at a meeting - Zopec DT-1200 which is specifically made to help with neuropathy. After a few months of using it twice daily for 30 minutes there were times when I thought my feet felt better but really couldn't tell.
The most important lesson that i have learned by being my own advocate is that there are a lot of people making money off of the suffering of people with peripheral neuropathy. I am not a doctor and have had no medical training so the only tool I have on my side is to educate myself and avoid scams and snake oils which can be challenging at times because everyone is looking for one magic pill or drug to make it all go away. Here are a few sites that can help you make a determination and how to avoid a scam:
Controversies exists in the world of complementary and alternative medicine. What appears to be working for you, may not work for others. Warnings for potential scams and guidance about avoiding scams and snake oil cures: http://mayocl.in/2gcdDNt
FDA's HEALTH FRAUD PAGE - http://bit.ly/2n6kpHr
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions
I have found a solution that works for me and has also worked for quite a few others with peripheral neuropathy. I don't know if it will work for you but I can share what it's done for me. When I started doing my research and received my diagnosis the numbness from my SFPN was in both legs from just below the knees down through the toes - my biggest concern was losing the ability to drive. I started taking a specific protocol of supplements (after discussing them with my doctor who shared the list with the Mayo pharmacist) in September 2016 and started seeing results within a few months around December 2016. Now the numbness appears to be just above my ankles instead of just below the knees. I haven't made any more progress so the numbness may never completely go away for me. I am OK with that because it means it has stopped the progression of the numbness which is a big deal for me.
I was a little skeptical at first when I found this closed group on Facebook. But I have tried a lot of things and had pretty much exhausted my options so I joined the group in August 2016. After reading all the material they have available, listening to group discussion videos and interacting in the Facebook group I decided to try the protocol being used by the group and I am happy I did. If you want more information, I would suggest joining the closed Facebook group and deciding for yourself - https://www.facebook.com/groups/952340464830989/. Once you have joined and read through the welcome new member information I would recommend searching the group by going to the top and clicking the search icon and typing #theprotocolworks and do a search of the group. This will bring up all the messages by members who are sharing how the protocol has helped them get their life back and eliminate the need to take pain drugs for the PN. The only instance I am aware of that the supplements will not help to repair a damaged nerve is when the damage is catastrophic - nerves crushed, torn by an accident, surgery or other condition which I learned through reading, listening to the group discussions.
I hope you all find and answer and solution that works for you.
John
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3 ReactionsMy husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.
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Helpful -
Hug
2 ReactionsThe way I cope is to do my best to ignore the numbness. There is no relief. There is plenty of snake oil spread in the cancer community: baking soda cures, reiki, acupuncture, Chinese herbs, essential oils, homeopathy. Yes, they could work for some. Placebo effects are powerful. That's why the gold standard when testing if a treatment is safe *and* effective is a double blind clinical study where the treatment beats the placebo. I looked at the FB group and the protocol doesn't meet that standard. And no given the placebo effect "it worked for me" doesn't cut it, especially when you're telling people to wean themselves off their medications before starting.
I have CIDP, newly diagnosed, so i am not much help but curious if anyone knows what can help the numbness in feet. Tired of falling down due to not feeling things.
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Like -
Helpful -
Hug
2 ReactionsIt's good to be skeptical but from your post I don't believe you actually read everything in the instructions which do not tell people to "wean" themselves off of the medications before starting. In fact it specifically says to not do it before you are on the full protocol and to work with your doctor if you have any questions. It works for me does cut it when the me is me. Granted it may not work for everyone but there are over 4000 members in the group and many that were bedridden and now have their life back and no longer have to take drugs that just mask the pain and come with their own set of problems.
There is no standard when it comes to peripheral neuropathy and if you think there is I would be interested in learning more as I have never seen one. Cymbalta, Lyrica and all the drugs that treat pain do it by masking the pain and do zero to address the problem that causes the pain - nerve damage. The longer you have the condition, the more the drugs cause additional problems and/or you keep having to up the dosage. So when left with a choice - drugs that mask the pain or a chance with something natural - minerals, vitamins, herbs and nutritional supplements that help your body heal on a cellular level, I will always keep an open mind to trying it.
The whole point of me sharing my story was to tell folks what works for me. Try it if you like, don't try it, but always do your own research and discuss it with your doctor. I am glad you are able to copy by ignoring the numbness. That's not an option for me as eventually the numbness aka nerve damage left to run it's course will get to where it affects the motor nervous system and the systems will get worse. Which is why my neurologist last words to me was let me know if it gets worse.
I wish you best of luck on your journey.
John
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1 ReactionWelcome to Connect, @lindy1956, @cintam,
@lindy1956, here is a link to detailed information about Guillain-Barré syndrome, from Mayo Clinic: http://mayocl.in/1jEmzFG
You may also be interested in this video about a patient with Guillain-Barre syndrome, who was treated successfully and with rehabilitation has full mobility back again: http://bit.ly/2oVULD6
I hope @lolla, who had posted about her daughter diagnosed with this condition, will return with some insight, too. You can view that discussion here:
My daughter suffers from Guillain-Barre syndrome: http://mayocl.in/2nXTyKM
@cintam, could you tell us a bit ore about Probita? What is it, and how has it helped you?
-
Like -
Helpful -
Hug
2 ReactionsHi, my name is Cindy and I just joined after my sister in law sent me this link. I have had 6 back surgeries and the last being a 7 level fusion. The surgery went well (Finally!) but one of the trade offs was peripheral Nueropathy. I have to sleep in the recliner and that is when I am able to sleep. There are nights all I do is walk around my bedroom because my feet are so bad all I want to do is cut them off. I tried everything that I know of, some of which are Norontin, Lirica, (sorry for my spelling) I spent over $3,000 for a special therapy that did not work. I spent $1,500 for a special infrared boot. (Thank god my husband is so supportive and willing to do anything to help me) The only thing that gives me relief is the Methadone that I have for my back which I honestly can do without (for my back). I even went to the point of getting a medical Marijuana license for pot but really do not like the feeling of being high so I have not really used it. What have some of the things others here have tried that worked. I know there is no cure for this. My symptoms are the feeling as though my circulation has stopped, feels like I have really tight socks on even when I don't have socks on.
I would be very interested in your stories and solutions. Thanks in advance!
-
Like -
Helpful -
Hug
1 ReactionI deal with post surgical neuropathy. There has been no pain relief & narcotics did not relieve any of the pain only gave me a fuzzy head. I've been offered medical marijuana as an option but cannot afford it. Others have suggested Kratom which I am seriously considering.
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Like -
Helpful -
Hug
1 ReactionI have chemo induced neuropathy which began just after my 2nd taxol treatment. I finished treatment January 7, 2007 and the CIN (diagnosed by MGM at Mayo) has become progressively worse ... affecting my feet and legs from toe to groin and also the 1st joint of my fingers. I'm lucky I don't have the shooting pains, but it's difficult to walk without falling when you can't feel your feet.
I had 15 treatments of laser IV therapy and soft tissue massage last summer which helped and have kept up with the maintenance visits. I have also followed that up with PT at a very. very good facility. I can walk about 100 feet unaided and probably twice or times that far with a walking stick of trekking poles - without falling, but not necessarily without pain in my ankles and thighs. I'm hoping to get an Rx for a Rollator with a seat today so that I can handle greater distances. It really limits my mobility when I can't stand a few minute unaided to talk to someone, stand in line for groceries, a movie etc.
I have high hopes that the Rollator will let me walk farther and longer safely so that my legs get stronger and I can start doing more things including working in my 8 x 100 foot perennial garden.
-
Like -
Helpful -
Hug
1 ReactionI have autonomic neuropathy as well as chemo induced peripheral neuropathy in my toes to my groin and also in the 1st digit of of my fingers. My endocrinologist surspect that I have Sjogren's syndrome in addition to Hashimotos thyroiditis. My worst problem is also numbness which has gotten much worse in the last couple of years which really affects my ability to anything that involves standing on my feete because of very poor balance. I have gotten some help with Laser IV treatments together with soft tissue massage and regular PT. I'm hoping to purchase a Rollator with a seat so that I can get outside and walk more. .. hoping it will at least strengthen my legs so that I can go further, stand in lines, etc.
-
Like -
Helpful -
Hug
1 Reaction