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Why test for neuropathy if there is no cure?

Neuropathy | Last Active: Apr 4, 2021 | Replies (87)

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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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Replies to "Hello @mechanicjesus, Welcome to Mayo Clinic Connect. You will notice that we have changed the title..."

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.

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.