Why test for neuropathy if there is no cure?

Posted by mechanicjesus @mechanicjesus, Oct 12, 2020

I was diagnosed a little over 2 years ago by my PCP I do have RA and when I would tell my ruhematologist about the pain in my feet he would just blow it off. So went to my PCP and he listened, looked at my blood work from ruhematologist and said it's neuropathy we thought maybe trigged by the biologic I was on at the time. He started me on Gabapentin and at my next ra appt we stopped that biologic and started a different one. Silly me I assumed this would clear up and go away after that. Fast forward to now things have progressed enough that I use a wheelchair when not at home and am on permenant disability now. I read these posts and a lot of you know a whole bunch about your PN but the one common theme I see is there is no fix. Somethings help some with the pain others are just a distraction but bottom line nothing gets better. So why go thru all tests, trouble and money to identify all the details when they don't help?

Hi Toni
without knowing your complete history, I cannot really be completely accurate. However, it may be important to know what "kind" of neuropathy you have, because some are treatable, such as vitamin B12 deficiency.
BTW, in regard to another post, idiopathic does indeed mean of unknown cause, but does not mean there is no treatment. And treatment does not mean cure.

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@user_che214927

Yes Hank , there is a fix. Look at my previous posts for my story. I am now practicing Neuroplasticity, and slowly but surely am progressing. Read the two books by Norman Doidge, or go into youtube and watch, AND GET EXCITED!

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@user_che214927
Crikey Barry! You have forgotten me already! 😥

No worries mate, but I am one of the ones who said after your earlier posts that I am a solid believer in N.plasticity. I am reading Doidge's first book now. I am hoping to hear someday in the future that you are completely free of PN and ready to start your next career – gold mining perhaps. Go Barry! (Now throw another shrimp on the barbie for me, will ya?)

OK, thankfully for you I am out of timeworn Aussie phrases. Best, Hank

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@jeffrapp

Hi Toni
without knowing your complete history, I cannot really be completely accurate. However, it may be important to know what "kind" of neuropathy you have, because some are treatable, such as vitamin B12 deficiency.
BTW, in regard to another post, idiopathic does indeed mean of unknown cause, but does not mean there is no treatment. And treatment does not mean cure.

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Hi @jeffrapp I agree with the term idiopathic. To me, a doctor may not know the cause but it doesn’t mean that a patient can not think back to determine potential causes through the process of elimination. It is similar to having an allergic reaction which I never had up until recently. Within a week I found the culprit. I did not waste time going to doctors for questions I can ask myself.
Neuropathy caused by a vitamin B12 deficiency can become permanent if not treated early. In my case, my neuropathy was the result of the last surgical repair for my ruptured AVM. It was a circulation issue involving the embolization of blood vessels. I have learned to deal with it. Luckily, it has only affected the left side of my body from head to toe. I have found supplements that help with the burning pain. The pain differs day to day. I feel we all do the best we can with our ailments(we know our limitations) so we can remain somewhat independent. Toni

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@user_che214927

Yes Hank , there is a fix. Look at my previous posts for my story. I am now practicing Neuroplasticity, and slowly but surely am progressing. Read the two books by Norman Doidge, or go into youtube and watch, AND GET EXCITED!

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Hi Barry @user_che214927 I believe many folks are wanting a “quick fix” which I know is not achievable at this point; however, it doesn’t stop them from searching for one. Nothing wrong with keeping “hope” alive. Toni

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@avmcbellar

Hi @jeffrapp I agree with the term idiopathic. To me, a doctor may not know the cause but it doesn’t mean that a patient can not think back to determine potential causes through the process of elimination. It is similar to having an allergic reaction which I never had up until recently. Within a week I found the culprit. I did not waste time going to doctors for questions I can ask myself.
Neuropathy caused by a vitamin B12 deficiency can become permanent if not treated early. In my case, my neuropathy was the result of the last surgical repair for my ruptured AVM. It was a circulation issue involving the embolization of blood vessels. I have learned to deal with it. Luckily, it has only affected the left side of my body from head to toe. I have found supplements that help with the burning pain. The pain differs day to day. I feel we all do the best we can with our ailments(we know our limitations) so we can remain somewhat independent. Toni

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Whatever the cause of your idiopathic neuropathy, when your pain level interferes with living your life, it may be time to focus on relieving the pain. This June 2019 article from Foundation for Peripheral Neuropathy is worth a read: https://www.foundationforpn.org/2019/06/10/neuromodulation-for-refractory-neuropathic-pain/?blm_aid=120498
Incidentally, some of the newest devices are MRI compatible.

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@artscaping

Welcome to Connect @mechanicjesus. We are glad to be your hosts as you begin to explore the treatment options for neuropathy. Our mission is to improve the quality of life for every member of Connect. We do this by listening and learning from you. Then we introduce you to other members who have encountered the same or a similar situation and condition. I serve as a member mentor for the neuropathy group of patients, caregivers, and providers.

At this time when more of us are living so much longer, we are pretty much shocked by the fact that we pay for those extra years and even suffer through them.

We hear about the progress being made with regenerative medicine and realize that age-related conditions are not the first priority. In the Cancer clinic at Mayo, surgeons are performing oncoregeneration where healthy muscles are trained to function like the muscles that had to be removed because of cancer.

So when will it be our turn….us neuropathy folks? We need to know more, study more, and take some baby steps. We need to support the medical communities efforts. In so doing we can nudge and coax our body to just be there for us and perform with less discomfort. What are you most disturbed by at this juncture? Do you have fears of becoming more disabled and forced to live with more pain?

What one thing brings you the most joy? When you get back to me, I will see if somewhere we don't have some members who have walked your path and maybe are even party to your disappointment that there is no quick fix or permanent fix.

May you be free of suffering and the causes of suffering.
Chris

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I retired from a major pharmaceutical company. I can tell you the industry has put neuropathy research on the back burner. I don’t understand it because the market is huge. I am not very hopeful in the introduction of a new and effective treatment for SFN, or any neuropathy for that matter. Hopefully, I am wrong because hope s all we have.

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Magnum52. Neuroplasticity is a major threat to to pharmaceutical industry's massive profits, because they cannot find a product that neuroplasticity will produce without using any of their products, even pain relief. Big business educate the doctors on drugs generally, never mentioning neuroplasticity, thus maintaing their huge profit results . That is why it is no the back burner.

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Hi Barry. I understand what you are saying but I believe neuroplasticity is not a major threat to the pharmaceutical industry because not every person with neuropathy will choose to follow neuroplasticity. In fact most will decide on an easier path which will involve pharmaceuticals. Neuroplasticity takes time and discipline to perform the exercises. People will need to see doctors and therapists on a routine schedule. That is not an easy task for someone who suffers from neuropathy. I, for example. am willing to do the exercises but cannot travel twice a week to see therapists. Instead, I have elected in doing the exercises on my own as you have. Perhaps many cannot do exercises on their own. Having another option will allow for a more suitable resolution. In this case there is no need for the pharmaceutical industry to put the breaks on developing an end to neuropathy. I admire your patience with the exercises and wish you all the success in dealing with your neuropathy. I too still continue to see positive changes. Going on 4 months now. Good on you for keeping up the good work! Let us know about your progress. Toni

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I have both books by Doige. I would like to know what would be the appropriate mental exercises for reprograming the brain for Small Fiber Neuropathy which was caused by the Shingrix vaccine? Would it be to focus on eliminating the pain (shrinking pain brain maps areas) or stopping the production of the offending antibodies or both. What would the exercises specifically consist of???

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@dont

I have both books by Doige. I would like to know what would be the appropriate mental exercises for reprograming the brain for Small Fiber Neuropathy which was caused by the Shingrix vaccine? Would it be to focus on eliminating the pain (shrinking pain brain maps areas) or stopping the production of the offending antibodies or both. What would the exercises specifically consist of???

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@dont
Hi Don. I first heard about Doidge's books from Barry @user_che214927 who extols the use of neuroplasticity. From what he has said he uses it to change his own behavior, such as stopping itching and reducing the number of times he needs to get up at night to go to the bathroom. I guess through willpower. But, although he does say his neuropathy is not getting worse, I don't remember him mentioning reducing his pain level with neuroplasticity. I too would love to know whether neuroplasticity related exercises exist that can help to cut down PN pain. I have not been able to come up with anything intuitively. If brain maps have gotten larger from the constant sensation of pain, how does one reverse that, what type of exercises would one need to do? I don't know.

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@jesfactsmon

@dont
Hi Don. I first heard about Doidge's books from Barry @user_che214927 who extols the use of neuroplasticity. From what he has said he uses it to change his own behavior, such as stopping itching and reducing the number of times he needs to get up at night to go to the bathroom. I guess through willpower. But, although he does say his neuropathy is not getting worse, I don't remember him mentioning reducing his pain level with neuroplasticity. I too would love to know whether neuroplasticity related exercises exist that can help to cut down PN pain. I have not been able to come up with anything intuitively. If brain maps have gotten larger from the constant sensation of pain, how does one reverse that, what type of exercises would one need to do? I don't know.

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Hi Hank, it appears for the reduction of pain we are supposed to have an image of the brain mapped out with the pain sensory areas. Then determine which area is the one responsible for our particular pain and "exercise" by seeing the image in our minds and visualizing the specific pain map area shrinking. Supposedly, doing this repetitively over time it will cause our pain to decrease and ideally stop. It is unclear how much time per day and for how long this is to be done.

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@dont

Hi Hank, it appears for the reduction of pain we are supposed to have an image of the brain mapped out with the pain sensory areas. Then determine which area is the one responsible for our particular pain and "exercise" by seeing the image in our minds and visualizing the specific pain map area shrinking. Supposedly, doing this repetitively over time it will cause our pain to decrease and ideally stop. It is unclear how much time per day and for how long this is to be done.

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Hi Dan, the brain certanly controls pain ! Carefully read chapter 7 of Doidge's first book ' The brain that changes itself'. It works for me: back itch, or any totally gone, pain in feet and lower legs improving. Repetitively it is not good enough, it must dominate your thinking and become the person you are. You dominate the problem, not the other way. I simply will never ever scratch an itching skin on any part of my body.With pain., I do not take any medication, but, as per chapter 7, I change my thought. You can only have one thought in your mind at the same time. Only humans have the choice, and that is what I do. Reread the chapter and my best wishes. What you want out of life is our choice, and dominant thinking of what we want out of life, and must be a non negotiatable.

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