1. < Neuropathy

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?

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

Mentor
John, Volunteer Mentor | @johnbishop | Mar 28, 2021
In reply to @nrivers "HI John, I looked up that Harvard health thread, but couldn't access it, nor even buy..." + (show)
@nrivers

HI John, I looked up that Harvard health thread, but couldn't access it, nor even buy an on line subscription. But I wonder what the article said about "why do I smell odors that aren't real," because I have that problem. The symptoms of my PN include the numbness, pain and burning below the waist and the sense that my hands are constantly falling asleep, dizziness standing up, but also this odd smell that seems to follow me around. I have wondered if that is related to PN.

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@nrivers you can see the article the article if you search on Google for "New thinking on peripheral neuropathy" and go to the page that way. I did print the page using from their page and saved it as a PDF. I also found another page that talks about smell and neurology.

Taste and Smell - American Academy of Neurology: https://www.aan.com/siteassets/home-page/tools-and-resources/academic-neurologist--researchers/program-director-tools/16tasteandsmell_tr.pdf

Shared files

New thinking on peripheral neuropathy - Harvard Health (New-thinking-on-peripheral-neuropathy-Harvard-Health.pdf)

REPLY
1 reply
nrivers | @nrivers | Mar 28, 2021
In reply to @johnbishop "@nrivers you can see the article the article if you search on Google for "New thinking..." + (show)
@johnbishop

@nrivers you can see the article the article if you search on Google for "New thinking on peripheral neuropathy" and go to the page that way. I did print the page using from their page and saved it as a PDF. I also found another page that talks about smell and neurology.

Taste and Smell - American Academy of Neurology: https://www.aan.com/siteassets/home-page/tools-and-resources/academic-neurologist--researchers/program-director-tools/16tasteandsmell_tr.pdf

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John, thank you so much. It seems that so many things are caused by nerve dysfunction! But it's also very complicated indeed!

REPLY
oldkarl | @oldkarl | Mar 28, 2021
In reply to @nrivers "Hi Barry, MechanicJesus and all, I, too, have found significant help through the practice of meditation,..." + (show)
@nrivers

Hi Barry, MechanicJesus and all, I, too, have found significant help through the practice of meditation, writing, somatic tracking--all those things you can do to help your brain turn down the pain signals it is continually sending. Neuroplasticity is not a quick fix, that's for sure, and may not be able to fix certain things at all, but it has helped me refocus my attention in ways that help me live with the discomfort. I am so sorry that your PN has progressed to the point you describe, mechanicjesus, and I know it must be incredibly difficult to live with that kind of disabling disease. It is wonderful that you have a loving relationship with your spouse, as well as reasons to keep on keeping on! I am praying for research that will yield cures and for meds that really make a difference for all of us, and particularly for you. Yet, I would recommend the books, websites, and therapists who are doing work in the area of chronic pain through neuroplasticity. You don't hear much about it from most docs, but at least for me, it has been a real help!

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@nrivers I have been reading and thinking about PN for many years. The first recollection I have of that feeling was about 60 years ago while I was playing football for U of Puget Sound. Since then I have fought that sensation all over my body at different times. Feet (even individual toes), calves, thighs, hips, skin around my trunk, shoulders, head, tongue, hands, arms, eye sockets, scalp. All over at different times and different groups. And I have tried every med my 50 docs have suggested, from aspirin to opium to marijuana. The Mary Jane caused me to wreck our car in our own driveway. So far, only one substance has been regularly successful, and I think I know why. Small doses (1/4 Teaspoon) in a glass of warm water has regularly worked. Actually, I have had some success with warfarin. I think it is because PN is a blood disorder, not just nerve. The nerve myelin and actin sheathes around the nerve cells block the needed blood contents from getting into the cells in the proper order of things. But these two blood thinners, especially the turmeric, enable the blood elements to get through the actin and myelin sheathes and supply the needs of the nerve cells. But both these blood thinners are dangerous if one takes too much. Now, there are two caveats. First, I am not a medical doctor, so I have to get whatever knowledge I can get from wherever I can take it. And, I could be way wrong. This is only my personal experience of 60 years. I have a number of genetic issues which may be causing this. Diabetes 2, Gelsolin (Finnish Amyloidosis), and FKTN (Fukutin Limb Girdle Muscular Dystrophy #4. But I use Turmeric once or twice every month, it seems. And it works. Selah.

REPLY
1 reply
nrivers | @nrivers | Mar 29, 2021
In reply to @oldkarl "@nrivers I have been reading and thinking about PN for many years. The first recollection I..." + (show)
@oldkarl

@nrivers I have been reading and thinking about PN for many years. The first recollection I have of that feeling was about 60 years ago while I was playing football for U of Puget Sound. Since then I have fought that sensation all over my body at different times. Feet (even individual toes), calves, thighs, hips, skin around my trunk, shoulders, head, tongue, hands, arms, eye sockets, scalp. All over at different times and different groups. And I have tried every med my 50 docs have suggested, from aspirin to opium to marijuana. The Mary Jane caused me to wreck our car in our own driveway. So far, only one substance has been regularly successful, and I think I know why. Small doses (1/4 Teaspoon) in a glass of warm water has regularly worked. Actually, I have had some success with warfarin. I think it is because PN is a blood disorder, not just nerve. The nerve myelin and actin sheathes around the nerve cells block the needed blood contents from getting into the cells in the proper order of things. But these two blood thinners, especially the turmeric, enable the blood elements to get through the actin and myelin sheathes and supply the needs of the nerve cells. But both these blood thinners are dangerous if one takes too much. Now, there are two caveats. First, I am not a medical doctor, so I have to get whatever knowledge I can get from wherever I can take it. And, I could be way wrong. This is only my personal experience of 60 years. I have a number of genetic issues which may be causing this. Diabetes 2, Gelsolin (Finnish Amyloidosis), and FKTN (Fukutin Limb Girdle Muscular Dystrophy #4. But I use Turmeric once or twice every month, it seems. And it works. Selah.

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Thank you for sharing what you have learned from your own experience. Trial and error, it seems, is part of treatment protocol. Carefully though. And I liked the use of "selah" at the end. 🙂

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 29, 2021

Note from the Community Director
When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. Here is an article from Mayo Clinic that about evaluating claims http://mayocl.in/2tGC0Jp

With respect to neuropathy and anti-coagulants, published research leaves this topic up for discussion. Warfarin can cause neuropathy. However, preliminary literature has also shown that anti-coagulants may play a beneficial role in MGUS-induced neuropathy. The evidence is not conclusive.

Always discuss changes to medications and supplements with your doctor.

REPLY
jrayk | @jrayk | Mar 29, 2021
In reply to @magnum52 "I retired from a major pharmaceutical company. I can tell you the industry has put neuropathy..." + (show)
@magnum52

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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I listened to a video presented by Sarah Busch, PhD, Pre-clinical Development, Athersys last week. Athersys is a small public biotech (ATHX) that is developing a stem cell therapy called MultiStem. It is in various phases of public trials to show safety and efficacy for acute inflammation resulting from a) stroke, b) acute respiratory distress syndrome (ARDS) and c) trauma, presently. Dr. Busch was detailing in her video (a summary of Athersys' pre-clinical programs) a use of MultiStem that would reduce inflammation that causes demylation, indicating that perhaps MultiStem could actually 'remylate' the damaged nerve endings. I am very excited about this possible indication, although it will be years before any trials are conducted, due to the smaller sizes of the total addessable markets for this indication. Nonetheless, I am trying to learn more about this possible future indication from Athersys. Disclosure: I am a shareholder in Athersys, but until last week, I had no idea that their product/therapy (if approved by the FDA) would also target PN or similar neurological ailments.

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Hayabusa1300 | @milesdaviskindofblue | Apr 4, 2021

Mechanic Jesus I to am in a wheelchair
And no success with anything I’m on 4500 mg of Gamapetin a day along with a permanent tens unit does nothing for me
I’ve tried everything even bee stings didn’t even know I was being stung until guy ask if I could feel it 5 stings later constant pain never stops moved up my right side I drop things etc. Tremors, electric shocks throughout the day jerks , no sleep
Even with sequel at 300mg a day split half midday/ other at night with 40 mg Paxil
I’ve had 2 Achilles tears didn’t even know it
4 blood clots one caused by a podiatrist injection into inside of ankle portion very early on when this started and caused a blood clot which went to my lungs it’s been a scary ride for me and still no answer’s all doctors think your crazy .. I guess until this happens to them they won’t know what you and others go through everyday challenges

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