Why test for neuropathy if there is no cure?

Posted by mechanicjesus @mechanicjesus, Oct 12 3:15pm

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?

@mechanicjesus

We continue to seek out viable treatments because many people receive relief from pain in a wide variety of meds, implants, psychotherapy and PT treatments. We continue to hold out hope.

Jim

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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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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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@mechanicjesus, I'll add my welcome.

It's important that you understand the purpose of the testing, as you said the tests are expensive and if there is no cure. It's understandable you'd want answers.

Have you attempted to discuss the reasoning behind testing with your provider?

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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

Jump to this post

I don't fear the pain just grow weary of it. When it is at a level 10 it does get some extra respect. The thing that brings me joy is my wife she is always there to help me.

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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?

Jump to this post

I was on Enbrel at the time we don't know if that was the cause or if it is just from the RA. I have seen a Neurologist and they did several tests in the end all they did was confirm the neuropathy and offer the same drugs I was already using or had tried.

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@erikas

@mechanicjesus, I'll add my welcome.

It's important that you understand the purpose of the testing, as you said the tests are expensive and if there is no cure. It's understandable you'd want answers.

Have you attempted to discuss the reasoning behind testing with your provider?

Jump to this post

I'm curious as to what is driving other people to seek the answers.

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@mechanicjesus

I don't fear the pain just grow weary of it. When it is at a level 10 it does get some extra respect. The thing that brings me joy is my wife she is always there to help me.

Jump to this post

Good evening @mechanicjesus, Well…..the members came to the "why bother?" party.

I am glad you are in a supportive relationship. Sometimes, it is so difficult for the caregiver to have to watch her/his loved one suffer. I have been a caregiver and it is a challenging role.

That pain level phrase is a good one. It becomes more than annoying and gets some extra respect. You mention the drugs you have used or are using. Would you feel o.k. about sharing. How is your pain being managed?

I see you got the attention of our moderator, @erikas to engage in some philosophical and medical discussions about testing. I will also look forward to understanding more about this topic.

Glad you got to meet @johnbishop. He has walked down your path.
Do you have trouble getting to sleep and then staying asleep?

May.you be content and at peace.
Chris

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@mechanicjesus

I don't fear the pain just grow weary of it. When it is at a level 10 it does get some extra respect. The thing that brings me joy is my wife she is always there to help me.

Jump to this post

@mechanicjesus
Hi, your original question was "why go thru all tests, trouble and money to identify all the details when they don't help"

I think you answered that yourself when you said "When it is at a level 10 it does get some extra respect"

Many people here who are suffering from relentless, debilitating, mind-numbing pain are trying to figure out what it is that is causing this, i.e. the pain has gotten their attention, and respect as you say. For some it just gives them peace of mind to be able to identify it, what it is and what caused it. For others they feel they want to know specifically what kind of PN they have, small fiber, large fiber, autonomic, etc.

My wife has been dealing with pain from PN for 6 years. Because her PN started a day after her second chemo infusion she felt she knew immediately that it was neuropathy from the chemo and did feel any need to be tested. From that point it is more a matter of research to find out what types of things might help to reduce the pain level.

By now she has arrived at a point were she is taking a variety of supplements. Some are specifically to help the body deal with neuropathy, such as benfotiamine, berberine, d3, r lipoic acid and curcumin. Some are to help increase her energy level, such as acetyl l carnitine, niagen, Co Q10. She found that something called Penetrex helps her reduce her pain level enough to get to sleep at night. She tries to be healthy, reducing her sugar intake and eating mostly organic foods.

I would say that if you do not want testing, then, like my wife, it might be better to simply focus on trying things to see what might help you, such as when your doctor changed you to a different biologic. For most it's a life of trial and error to hit the target that none of us can see clearly. I am sorry your PN has progressed to where you need to use a wheelchair when not at home. Can you talk about other lifestyle changes you have had to make? What things do you personally do for your neuropathy? I'm glad you are happily married, that is a huge blessing!

Best to you, Hank

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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!

20200816_112018

20200626_125730

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Dittos, Peripheral Neuropathy is an ideopathic disease which means doctors do not have an answer about cause or treatment

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Hi @dwlowrance this is true but I believe some people want to find their exact diagnosis to determine what they are suffering from. It may help in the long run for any medical advancements. I have neuropathy but at this point it is not important to me to determine which kind. I will if and when it is necessary for medical intervention. Toni

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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!

Jump to this post

@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.

Jump to this post

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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