1. < Neuropathy

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.

sunnyflower | @sunnyflower | Nov 15, 2020
In reply to @jesfactsmon "What we have now for PN from the medical industry and the "alternative" medical industry are..." + (show)
@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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Being in a swim pool helps me. A warmer than normal one such as we have for rheumatology patients. Haven't been in it for about a year and a half bc I got kicked so hard it firmed a blood clot. I always get hurt in the piol. Can't feel wetness in any of my skin! Love it, wish I could be there. Sunny

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Barry Sheales | @user_che214927 | Nov 15, 2020

Helen, I'm trying, and believing, so we will see? Humor is also a good habit I encourage. Particularly laughhing at yourself, when you slip or fall. Getting back on your feet , with a smile on face also very motivatin!g

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ali1974 | @ali1974 | Nov 16, 2020
In reply to @jesfactsmon "@user_che214927 Hi Barry, it sounds a bit like you are scolding others for being interested in..." + (show)
@jesfactsmon

@user_che214927
Hi Barry, it sounds a bit like you are scolding others for being interested in research into neuropathy that is something other than neuroplasticity.

I give you lots of credit for firmly believing in neuroplasticity for YOU. But saying the word "neuroplasticity" a hundred times or more over many different posts does not actually describe what exactly it is you are DOING. Reading your posts made me interested in reading more about it, and so far I still do not know what to actually DO. What are the specific exercises? How does a person go from drinking in all of your personal enthusiasm about neuroplasticity to making it into something that can help them? All I have garnered from what you have said on the subject so far is that neuroplasticity must be another word for "will power". If I am dead wrong about that then please explain how I am wrong.

For some (many? most?) of us I think having hope for a breakthrough to occur in medical research of neuropathy is not a bad thing. Even while trying to do other things, like you for example, as you use neuroplasticity in some mystical way that you seem to understand.

Best, Hank

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Hi Hank,

I also agree with you, I suffer a great deal of pain and loss of feeling. I don’t really understand what Barry is peddling.

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2 replies
Hank | @jesfactsmon | Nov 16, 2020
In reply to @ali1974 "Hi Hank, I also agree with you, I suffer a great deal of pain and loss..." + (show)
@ali1974

Hi Hank,

I also agree with you, I suffer a great deal of pain and loss of feeling. I don’t really understand what Barry is peddling.

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@ali1974
Hi Alice, I sent you a PM (private message) on a different topic. To read my PM just click on the little envelope symbol in the above right area of this page. Thanks, Hank

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lorirenee1 | @lorirenee1 | Nov 16, 2020
In reply to @user_che214927 "Thanks😅Helen. I want to beat this bloody PN, Not just for me but hopefully encourage others..." + (show)
@user_che214927

Thanks😅Helen. I want to beat this bloody PN, Not just for me but hopefully encourage others have a go at what I am doing, and basically experience a real lifestyle and mental çhange. Best wishes! Attached is a humorous shot of how neuroplasticity is affecting me.

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Barry, @user_che214927 You are a hoot, and if anyone has a chance at successful results with Neuro plasticity, it is you. I often listen to old comics on you tube when dealing with severe pain, and it does help. Have you ever seen the Copper Clapper Capers on you tube? Hysterical. Or, Jimmy Kimmel interviewing old people about their sex life is another fabulous one. Barry, I am trying! LoriRenee

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lorirenee1 | @lorirenee1 | Nov 16, 2020
In reply to @ali1974 "Hi Hank, I also agree with you, I suffer a great deal of pain and loss..." + (show)
@ali1974

Hi Hank,

I also agree with you, I suffer a great deal of pain and loss of feeling. I don’t really understand what Barry is peddling.

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@jesfactsmon @user_che214927 Hi guys, from what I have gleaned from watching many Norman Doidge videos is that the greater we concentrate on pain, the better the brain gets at perceiving it. A very sad fact about the brain. The brain gets entrenched in doing it quite well. What Doidge does not say, at least in his videos, is what to do when in severe pain. He only gives one example of a doctor he knows who concentrated repeatedly on 3 MRI images, the last one being the normal one that he wanted to achieve. He concentrated endlessly, and for months. If my life depended on it, I doubt I could do that. Maybe when you take the Central Sensitization 3 week Pain Class at Mayo, you learn Neuro plastic activities. Dr. Jonathan Kuttner, from New Zealand, is developing an on line pain class, and will let me know when it is ready. For now, I do what I can, not to focus on pain, with intensive things that are fully engaging. I think that may be key. To totally engage the brain in something else. So for now, I am learning Spanish, taking IQ tests on line, reading great authors. I have to say, though, I am exhausted. Nothing is natural anymore, just for the joy of it. But I am trying, still. Gotta try to reroute this brain of mine. OY. LoriRenee1

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pfbacon | @pfbacon | Nov 16, 2020

Thank you LoriRenee. I am interested in the class. Peggy

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sunnyflower | @sunnyflower | Nov 17, 2020
In reply to @margaret10 "Hi Barry, There has been a recent development: a neuropathy biomarker called sarm1 has been identified..." + (show)
@margaret10

Hi Barry,

There has been a recent development: a neuropathy biomarker called sarm1 has been identified by a start-Up company called Disarm. Disarm was recently acquired by Lilly. Sarm1 is a naturally occurring protein that is activated when a nerve is damaged. Sarm1 induces inflammation which further damages the nerve and surrounding tissue. Lilly is developing inhibitors of sarm1 which could act to stop the inflammatory reaction and stop further damage to the nerve. I don't know if inhibitors have been identified yet. However, I think we are looking at 5-10 years before such inhibitor could make it to market.

One big selling point for this line of research is that such inhibitors could be useful in the treatment of other neurodegenerative disorders like Parkinson's. In short, there could be a big market for such inhibitors which obviously is a big motivating factor for pharmaceutical companies.

Margaret

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Hello Margaret, I am Sunnyflower. Wow this info is fantastic!! Thanks so much! I wonder if any neurologists know about this? Warmest wishes, Sunnyflower

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1 reply
sunnyflower | @sunnyflower | Nov 18, 2020
In reply to @catharbert "Please see the Foundation for Peripheral Neuropathy newsletter for information on Congressional action to fund research::..." + (show)
@catharbert

Please see the Foundation for Peripheral Neuropathy newsletter for information on Congressional action to fund research::
https://www.foundationforpn.org/2020/11/06/advocating-for-peripheral-neuropathy-research-funding/?blm_aid=1754340353

Update on the 2021 Appropriations Bill

On November 10, 2020, the Senate Committee on Appropriations released their version of the fiscal year 2021 Defense Appropriations Act. We are excited to report that this legislation includes “peripheral neuropathy” among the conditions eligible for research under the Peer-Reviewed Medical Research Program (PRMRP).

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Thank you so much! 😊

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 18, 2020

Foundation for Peripheral Neuropathy Webinar
Living Well with Peripheral Neuropathy: Ask the Expert
-- Wed, Dec 16, 2020 2:00 PM - 3:00 PM CST

FPN welcomes Dr. Shanna Patterson for a special session to answer YOUR questions on Living Well with Peripheral Neuropathy. Join us for some first hand answers to your questions from an expert on peripheral neuropathy.

Dr. Shanna Patterson, M.D., FPN’s Patient Education Advisor, is Assistant Professor of Neurology at Mount Sinai West in New York City.

Note: Questions should be general in nature. We are unable to answer questions related to a patient's specific care, treatment, or diagnosis.

Register for the Webinar - https://register.gotowebinar.com/register/7143578033665189643

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