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.

@sunnyflower

Hello Helen, hope this finds you well. A friend of mine has told me about Quercetin I just haven't taken the time to look into it yet but now you have motivated me to do so. So thank you and take good care of yourself, Sunny flower. 😊

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Hi Sunny, I think we all need a medical secretary to take care of all of our health related duties! They could do our research, note taking, shopping, opinion/ advice giving, be a shoulder to cry on, listen to our complaints, etc. Any takers out there? Anyway, I hope you see a positive result if you try it. Please let us know; itching seems to be a not uncommon symptom. Helen

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Helen, thank you. I did not know that we could do it that way. That actually sounds easier than what we go through with our health insurance company. Medicare reimburses you for medicines too? Peggy

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@pfbacon

Helen, thank you. I did not know that we could do it that way. That actually sounds easier than what we go through with our health insurance company. Medicare reimburses you for medicines too? Peggy

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Peggy, the drug plan is separate, We have Medicare, (not Advantage) supplemental, plus a drug plan. Helen

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@helennicola

Hi Sunny, I think we all need a medical secretary to take care of all of our health related duties! They could do our research, note taking, shopping, opinion/ advice giving, be a shoulder to cry on, listen to our complaints, etc. Any takers out there? Anyway, I hope you see a positive result if you try it. Please let us know; itching seems to be a not uncommon symptom. Helen

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@helennicola
Wow Helen, you have just recounted my job description. So I guess I am a medical secretary as I do all the things you mention. I have yet to see a paycheck, but I can't complain. The other rewards are quite amazing. Best, Hank

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@jesfactsmon

@helennicola
Wow Helen, you have just recounted my job description. So I guess I am a medical secretary as I do all the things you mention. I have yet to see a paycheck, but I can't complain. The other rewards are quite amazing. Best, Hank

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Hank, if you believe in Karma you also have something wonderful to look forward to in your next life! 😄 Helen

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Regenerative therapies are moving forward but will still take a number of years for FDA approvals. I am particularly following stem cell regenerative therapeutics developments, with Japan's Government being very supportive of new therapy developments. Our FDA is not moving so fast here given the Covid pandemic, but they are just now approving some regenerative stem cell therapies that are related to Covid. So at least some movement forward for relief maybe for us with PN.

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@helennicola

Hi Sunny, I think we all need a medical secretary to take care of all of our health related duties! They could do our research, note taking, shopping, opinion/ advice giving, be a shoulder to cry on, listen to our complaints, etc. Any takers out there? Anyway, I hope you see a positive result if you try it. Please let us know; itching seems to be a not uncommon symptom. Helen

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Amen Helen! And we could also use a wife once in a while. Occassionaly, only every day or so LOL!! I can't spell! Take care, Sunnyflower

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@jesfactsmon

@user_che214927
Hi Barry, you have talked about this now for a while. Please see my post from yesterday addressed specifically to you:
https://connect.mayoclinic.org/discussion/barry-sheales-australia/?commentsorderby=DESC#chv4-comment-stream-header
Your excitement is palpable. But I don't quite get the crux of what exactly it is you are doing, and it isn't clear (to me at least) from that book. I'd really like to know. Simply looking for a little more clarity from you.

In the spirit of learning, best, Hank

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Ok folks, I have really great news. On 23rd Dec.2020, I woke up in the middle of the night, with both legs, from ankle to top of thigh, and both arms, from wrists to a couple of inches above both elbows, burning like a severe sunburn, with chronic itch on all four limbs. I knew that this was the ultimate challenge to my belief in neuroplasticity .. The rule concerning itch is; NEVER, NEVER, SCRATCH AN ITCH, and that's what I did.. My thinking,was that I really should go to a hospital emergency centre ,but decided to hang in. After four days THE ITCH graduly reduced and was gone totally by 2ND January. The rash was much slower , but is now almost gone. Another, to me, almost a miracle is that the numbness in my feet , ankles and lower leg muscles, has reduced and feeling returning. I am now walking 2 kilometres per morning using 2 walking sticks, with forearm clasps, increasing the distance every Monday morrning by 100 metres.

My daily treatment was and still is, every morning.
1.EXTREMELY HOT SHOWER, USING HAND SPRAY TO EVERY PART OF MY BODY, INCLUDINNG HEAD AND NECK, LEAVING MY BRIGHT RED
2.DRY MY SKIN AND APPLY A BASIC MOISTURISING LOTION.
3. DRINK 2 GLASSES OF COLD WATER AND GO FOR MY WALK.

SUMMARY IS THAT NEUROPLASTICITY DOES WORK AND I EXPECT A TOTAL CURE!
I am now aged 90, and still on nil medication. Over the last month my eyes and optic nerve was examined by a Ortho Ophthalmologist, who found all was well, and that my slightly dry eyes would vanish as I emproved. HE also agreed with the opinion of my Neurologist, both world ranked specialists, who forcast, " Yes, a cure is possible, but it wont be easy"
All that I heard was , YES IT IS POSSIBLE.
I DONT CARE HOW HARD IT IS!

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@johnbishop

Hello @mechanicjesus, Welcome to Mayo Clinic Connect. You will notice that we have changed the title of your discussion to better identify the question you are asking and allow members to join in and share their thoughts. It's the same question I asked myself over 20+ years ago until I just had to know. When I first talked to my doctors about the tingling and numbness in my toes on both feet, they told me it was probably nerve damage. They said they can test for to see if it's nerve damage. When I asked what can you do it is nerve damage, they said nothing so I stopped asking. Over the years it gradually progressed and I felt an urgency to find out if there was something I could be doing to prevent further progression of the numbness.

In 2016 I decided I needed to know and through a referral to a neurologist I was diagnosed with idiopathic small fiber peripheral neuropathy with numbness as my only symptom. The doctors answer was what I expected but not what I was hoping for, we have no treatment for the numbness. This was really the reason I originally joined Connect to search for a support group and try to find something that helps me. I posted my neuropathy story along with the stories of other members in the following discussion - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here's an excerpt from the following article that you may find some interest in - "Why do I smell certain odors that aren't real? » ... Doctors have long known peripheral neuropathy as a nerve condition that causes reduced ... used to diagnose neuropathies, such as special biopsies that measure nerve endings in the skin, ... "Neuropathy can often be improved, occasionally cured, and quality of life can be ..." -- New thinking on peripheral neuropathy: https://www.health.harvard.edu/diseases-and-conditions/new-thinking-on-peripheral-neuropathy

In retrospect, I think I would want to know the specific diagnosis of neuropathy on the chance it could be caused by something that could be fixed - maybe a pinched/compressed nerve or damaged nerve that could be corrected by surgery.

You mentioned your rheumatologist said they thought your neuropathy was caused by a biologic you were on at the time. Can you share what biologic you were on or if you had any tests to confirm neuropathy?

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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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@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, 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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