1. < Neuropathy

Axonal peripheral neuropathy: Finally, a diagnosis!

Posted by Ray Kemble @ray666, Aug 6, 2022

Hello!

I know I've been here before, but probably not for many months For the past few years, I have seen specialist after specialist hoping to finally receive a diagnosis. Only last Monday I was told by the most recent of several neurologists that I have axonal (loss) peripheral neuropathy. Now that I have a name to attach to my problem, I would love to talk with others who have received similar diagnoses. I have such basic questions: What to do now? What should I expect? Where do I go from here?

Ray (@ray666)
Denver

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

rowun4 | @rowun4 | Oct 4, 2023
In reply to @seanywonton "This sounds like me too. Completely restructuring meaning after losing most of my outoodr physical pursuits...." + (show)
@seanywonton

This sounds like me too. Completely restructuring meaning after losing most of my outoodr physical pursuits. Still being able to do a few things but at a radically different tolerance level. It's tough to readjust to that. If you feel like hiking a mile uphill is like what climbing a mountain used to be like...and then pay for it with a lot of pain sometimes for days after...well that's just tough. Still, we are lucky to be alive and to be able to do what we get to do. I can't really put a more positive spin on it than that.

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Still in the process. As a Veteran, it was my training to PUSH THRU IT..meaning anything & everything.
I guess this is why I’m here. I’m not the most artistically gifted(lol).
It’s nice(but unfortunate) that there are others that are making new lives.
I made idk mantra (when I was bed bound)..” I will defy my fate, to live my destiny !”- maybe a little cheesy but it helped at the time.
Any other suggestions?

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vtsnowbird | @vtsnowbird | Oct 4, 2023

What’s the latest treatment for neuropathy, new to Mayo and neuropathy

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1 reply
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John, Volunteer Mentor | @johnbishop | Oct 4, 2023
In reply to @vtsnowbird "What’s the latest treatment for neuropathy, new to Mayo and neuropathy" + (show)
@vtsnowbird

What’s the latest treatment for neuropathy, new to Mayo and neuropathy

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Welcome @vtsnowbird, Interesting question and you might get a lot of different answers depending if you are talking drugs for neuropathy pain, spinal cord stimulators, TENS units and on and on. I only have numbness with my neuropathy and have had it 30 years or more so there are no drugs or treatments I've found that do much for the numbness.

The Foundation for Peripheral Neuropathy has a lot of information on the latest research being done for neuropathy that you might find helpful - https://www.foundationforpn.org/blog/. Neuropathy Commons is another good source for neuropathy information - https://neuropathycommons.org/.

Have you been diagnosed with neuropathy? Do you mind sharing a little more about your symptoms and any treatments you've tried?

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normale | @normale | Oct 6, 2023

Good Luck! I mean this to be taken seriously. I had this diagnosis (axonal periferal neuropathy) since 1987 when 2 eminent doctors told me that there is nothing that can be done about it. I am now 92 years old. I've barely thought about the neuropathy. So...I hope y ou have GOOD LUCK also. Just don't give u;.

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artemis1886 | @artemis1886 | Oct 6, 2023
In reply to @silvern12 "No basically just meds which i do not want to take I did not like how..." + (show)
@silvern12

No basically just meds which i do not want to take I did not like how I felt I go to physical therapy for balance and gait. Pain has subsided a lot Really feel covid booster made it worse. But stiffness in feet and legs has me off balance. Trying to get into Mayo Not much luck yet

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Covid shots have been proven to make it worse! I would have never taken them had I known.

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cantab | @cantab | Oct 6, 2023
In reply to @artemis1886 "Covid shots have been proven to make it worse! I would have never taken them had..." + (show)
@artemis1886

Covid shots have been proven to make it worse! I would have never taken them had I known.

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Not true! Another floating rumor. I have axonal neuropathy and I have uotodate Gcovid shots plus the new RSV vaccine. I felt fine all along. Plus I have monthly B12 injections out of necessity.

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2 replies
artemis1886 | @artemis1886 | Oct 6, 2023
In reply to @cantab "Not true! Another floating rumor. I have axonal neuropathy and I have uotodate Gcovid shots plus..." + (show)
@cantab

Not true! Another floating rumor. I have axonal neuropathy and I have uotodate Gcovid shots plus the new RSV vaccine. I felt fine all along. Plus I have monthly B12 injections out of necessity.

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My neurologist tested me one month later after the second Moderna mine had gotten a lot worse he gave me an article to read. It affects everyone differently. My diagnosis is small fiber neuropathy (heart, kidneys, gastroparesis, heart, pancreas, bladder) second diagnosis severe axonal sensorimotor polyneuropathy.
I already have atrophy in both legs. I can’t feel my hands constantly getting stitches for cutting up my fingers while cooking. I get bi weekly B12 shots for years.

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artemis1886 | @artemis1886 | Oct 6, 2023
In reply to @cantab "Not true! Another floating rumor. I have axonal neuropathy and I have uotodate Gcovid shots plus..." + (show)
@cantab

Not true! Another floating rumor. I have axonal neuropathy and I have uotodate Gcovid shots plus the new RSV vaccine. I felt fine all along. Plus I have monthly B12 injections out of necessity.

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My cardiologist and neurologist gave me the articles to read on the Moderna shot and neuropathy. Google it. This website does not allow attachments from the journal of medicine.

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2 replies
cantab | @cantab | Oct 7, 2023
In reply to @artemis1886 "My cardiologist and neurologist gave me the articles to read on the Moderna shot and neuropathy...." + (show)
@artemis1886

My cardiologist and neurologist gave me the articles to read on the Moderna shot and neuropathy. Google it. This website does not allow attachments from the journal of medicine.

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So what was their conclusion?

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