No wonder there is so little being done about Neuropathy!

Posted by steeldove @steeldove, Nov 7, 2020

When neuropathy isn't even listed as a major neurological disorder:https://jamanetwork.com/journals/jamaneurology/fullarticle/2772579

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

What we have now for PN from the medical industry and the "alternative" medical industry are pain aids. We all know them. The main ones are gabapentin, Lyrica, duloxetine, followed by opioids, and then of course the cannabinoids, kratom, ketamine, etc. etc. and on and on. Most of these are little more than band-aids at best for most PN sufferers.

What we do not have is a cure. But there is some research ongoing toward one. Of the ones I have heard about, there is Winsantor with their pirenzepine based WST-057, and several companies (WEXpharma, Chromocell, several others) investigating voltage-gated sodium channel blockers. My hope is that one day something will click. That one of these lines of research will result in producing an effective aid in helping to remove the source of the pain itself.

Having hope is not a bad thing. I think life is worse off without hope than with it. So I think it's good to maintain hope for a breakthrough. That does not mean we should not try other things in the meantime. Perhaps neuroplasticity, myofascial release, or some other pursuit will give relief to some people. Great. But while I keep open to all possible short term fixes, I for one am going to maintain my hope for a more significant breakthrough to occur someday, regardless of whether or not it happens in time to help my wife's situation.

Best, Hank

REPLY
@jesfactsmon

What we have now for PN from the medical industry and the "alternative" medical industry are pain aids. We all know them. The main ones are gabapentin, Lyrica, duloxetine, followed by opioids, and then of course the cannabinoids, kratom, ketamine, etc. etc. and on and on. Most of these are little more than band-aids at best for most PN sufferers.

What we do not have is a cure. But there is some research ongoing toward one. Of the ones I have heard about, there is Winsantor with their pirenzepine based WST-057, and several companies (WEXpharma, Chromocell, several others) investigating voltage-gated sodium channel blockers. My hope is that one day something will click. That one of these lines of research will result in producing an effective aid in helping to remove the source of the pain itself.

Having hope is not a bad thing. I think life is worse off without hope than with it. So I think it's good to maintain hope for a breakthrough. That does not mean we should not try other things in the meantime. Perhaps neuroplasticity, myofascial release, or some other pursuit will give relief to some people. Great. But while I keep open to all possible short term fixes, I for one am going to maintain my hope for a more significant breakthrough to occur someday, regardless of whether or not it happens in time to help my wife's situation.

Best, Hank

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Good luck Hank on your decision, every major research entity including the worlds presigous universities have agreed that the brain is plastic and by practising Neuroplasticity, new neurons can be created, allowing the brain to repair itself. That the brain is plastic is the biggest revelation in over 200 years. I have spent probably 30 or 40 houra a week for many month researching medical research organisations and universities etc.to convince myself that neuroplasticity does work, BUT, if you dont believe that, with all your heart, it won't work. It is working for me , but I reckon it may take 2 years for me to get back to normal. I had an extremely itchy back problem. I visited my doctor who precribed ointment, and without give me relief , he referred me to a specialist, who prescribed a much stronger ointment, that had be applide every day for 2 weeks. As I could not apply myself, I had to pay for a nurse to come every day to do it, but it did not get rid of my angry itch. A couple of weeks on a hot sweaty night, it was driving mad atabout 2.30 am. I decided to use the method , outlined chapter 7, first Book. It meant ignoring the itch, and most definitely not scratching it. Of I never slept a wink, for the rest of the night. The next night itch continued but not as bad. The following night, the itch was there, but very minor. NOW LISTEN TO THIS: NThe next day my itch has totally has vanished. I get the occasinal urgre to scratch occasionally, but simply ignore it. It does take a bit of will power, but when you are getting results, even small improvements, the challenge is worth the effort and motivating as a result. My best wishes to you and your journey. The decision is yours Hank, as it is with me..

REPLY
@user_che214927

You are right Peggy, as with many people who have PN is that people want the quick fix: a tab.et , a cream etc, and that is what the big pharmaceutical companies want. They pump out possible solutions,and then educate the medical fraternity, doctors nurses etc. They are much like the cigarette industry denying the fact cigarettes maimed and killed . Like almost every level of the medical practitioners have one big thing in common. To earn big profits and net profit.servicing a population that want a quick fix.The last thing they want is a quick fix for PN. . A solution other than their products and loss of service is the nightmare of all nightmares for them, and that is why Neuroplasticity is practically never mentioned . The Pharmaceutical provide gifts , trips, also provide finance for new buildings and equipment etc. etc. Just remember, it not that long ago that the the tobacco industry advised and advertised, that smoking was soothing for pregnant women , and in fact healthy Best wishes from Australia

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What reading/book have you found helpful on neuroplasticity? Thanks

REPLY
@user_che214927

Good luck Hank on your decision, every major research entity including the worlds presigous universities have agreed that the brain is plastic and by practising Neuroplasticity, new neurons can be created, allowing the brain to repair itself. That the brain is plastic is the biggest revelation in over 200 years. I have spent probably 30 or 40 houra a week for many month researching medical research organisations and universities etc.to convince myself that neuroplasticity does work, BUT, if you dont believe that, with all your heart, it won't work. It is working for me , but I reckon it may take 2 years for me to get back to normal. I had an extremely itchy back problem. I visited my doctor who precribed ointment, and without give me relief , he referred me to a specialist, who prescribed a much stronger ointment, that had be applide every day for 2 weeks. As I could not apply myself, I had to pay for a nurse to come every day to do it, but it did not get rid of my angry itch. A couple of weeks on a hot sweaty night, it was driving mad atabout 2.30 am. I decided to use the method , outlined chapter 7, first Book. It meant ignoring the itch, and most definitely not scratching it. Of I never slept a wink, for the rest of the night. The next night itch continued but not as bad. The following night, the itch was there, but very minor. NOW LISTEN TO THIS: NThe next day my itch has totally has vanished. I get the occasinal urgre to scratch occasionally, but simply ignore it. It does take a bit of will power, but when you are getting results, even small improvements, the challenge is worth the effort and motivating as a result. My best wishes to you and your journey. The decision is yours Hank, as it is with me..

Jump to this post

@user_che214927

Barry, I spoke about hope in my previous post, but I did not mean to ignore ACTION. I did say that until a cure is found it's not bad to try any other thing that works to relieve one's pain. Taking action gives one a sense of purpose in the here and now along any hopes for some future possible cure.

So in your case you have managed very successfully to overcome your torturous back itch using your own will power. That is great and I congratulate you. My wife did the same thing. She has a horrible itching in her feet sometimes and she fights touching it or scratching it and it goes away after a time, occasionally it takes as long as a day or two.

But I am not so sure will power will work as well for everything. I am not sure it's as simple to eradicate the burning 8-9 level of PN pain in one's feet using just will power, is it? For one thing, what would you be willing yourself to do or not do? There is not an action similar to scratching where burning pain is concerned. So this is where the idea of using neuroplasticity to eliminate neuropathy loses me. I'm not particularly bright, but I am open minded and hope to understand this sometime.

Best to you and thank-you Barry, Hank

REPLY
@dpowell

What reading/book have you found helpful on neuroplasticity? Thanks

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Hello @dpowell, Welcome to Mayo Clinic Connect. I believe both of the books that have been discussed here are by Norman Doidge, M.D. - The Brain's Way of Healing and The Brain that Changes Itself. Information for both books are on his website - https://www.normandoidge.com/. Here's some more information on the topic...

- What is Neuroplasticity? A Psychologist Explains [+14 Exercises]: https://positivepsychology.com/neuroplasticity/
- TED Talks and YouTube Videos on Neuroplasticity: https://positivepsychology.com/neuroplasticity/#ted-neuroplasticit

Have you been diagnosed with neuropathy and looking for alternative treatments/therapy?

REPLY
@pfbacon

We're like the red ants fighting the black ants while there is an anteater standing over us. Let's pull ourselves back together. Research is good; new techniques are good, different treatments are good for different people. We need to write/call/email our elected representatives, pharma companies, the medical community, and potential investors/donors and get them excited about research and medicines for people who suffer from neuropathy. It looks like the ball has started rolling already ... What do you think? Peggy

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@pfbacon I think the most promising research would be in regenerative medicine. I'd love to try it on my legs, but unfortunately, Medicare isn't covering it, and it's too expensive for me to self-pay.

REPLY
@jesfactsmon

What we have now for PN from the medical industry and the "alternative" medical industry are pain aids. We all know them. The main ones are gabapentin, Lyrica, duloxetine, followed by opioids, and then of course the cannabinoids, kratom, ketamine, etc. etc. and on and on. Most of these are little more than band-aids at best for most PN sufferers.

What we do not have is a cure. But there is some research ongoing toward one. Of the ones I have heard about, there is Winsantor with their pirenzepine based WST-057, and several companies (WEXpharma, Chromocell, several others) investigating voltage-gated sodium channel blockers. My hope is that one day something will click. That one of these lines of research will result in producing an effective aid in helping to remove the source of the pain itself.

Having hope is not a bad thing. I think life is worse off without hope than with it. So I think it's good to maintain hope for a breakthrough. That does not mean we should not try other things in the meantime. Perhaps neuroplasticity, myofascial release, or some other pursuit will give relief to some people. Great. But while I keep open to all possible short term fixes, I for one am going to maintain my hope for a more significant breakthrough to occur someday, regardless of whether or not it happens in time to help my wife's situation.

Best, Hank

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@jesfactsmon Hank, take a look at research possibilities in regenerative medicine.

REPLY
@steeldove

@jesfactsmon Hank, take a look at research possibilities in regenerative medicine.

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@steeldove
OK, will do. Thanks Marilyn. Hank

REPLY
@dpowell

What reading/book have you found helpful on neuroplasticity? Thanks

Jump to this post

As pictured. These books written by Norman Doidge, are to be studied, not just a quick I spent a couple of mo ths on is first book ' Te Brain that hanges itself'.

REPLY
@jesfactsmon

@user_che214927

Barry, I spoke about hope in my previous post, but I did not mean to ignore ACTION. I did say that until a cure is found it's not bad to try any other thing that works to relieve one's pain. Taking action gives one a sense of purpose in the here and now along any hopes for some future possible cure.

So in your case you have managed very successfully to overcome your torturous back itch using your own will power. That is great and I congratulate you. My wife did the same thing. She has a horrible itching in her feet sometimes and she fights touching it or scratching it and it goes away after a time, occasionally it takes as long as a day or two.

But I am not so sure will power will work as well for everything. I am not sure it's as simple to eradicate the burning 8-9 level of PN pain in one's feet using just will power, is it? For one thing, what would you be willing yourself to do or not do? There is not an action similar to scratching where burning pain is concerned. So this is where the idea of using neuroplasticity to eliminate neuropathy loses me. I'm not particularly bright, but I am open minded and hope to understand this sometime.

Best to you and thank-you Barry, Hank

Jump to this post

There are no ifs or buts Neuroplasticity has been accepted world wide. Will power is minimal. Your brain changes, but nothing will change if you do not believe and become excited about Neuroplasticity. If you have read both books studiously, as must be done, you should understand, but maybe discussing with another person may help. If I could speak to you on camera it would help. Currently my PN is affecting my eyes and will be meeting up with a Neuro Ophthalmologist soon. Typing
on my small screen is not helping,, and I need write small messages only. I think I have gone as far as I can wih you via this medium. Good luck to both you and your wife.pictured is a new brain skill I am learning. Eating with chop sticks. When I have mastered this new habit, I will then do the same with my .left hand, thus building and changing parts of my brain. Give it a try!

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