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Axonal peripheral neuropathy: Finally, a diagnosis!
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
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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?
What’s the latest treatment for neuropathy, new to Mayo and neuropathy
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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1 ReactionGood 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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2 ReactionsCovid shots have been proven to make it worse! I would have never taken them had I known.
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 ReactionsMy 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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1 ReactionMy 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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1 Reactionhttps://www.webmd.com/pain-management/ss/chronic-pain-causes-solutions
Here is an article I just read about pain . I am attaching it.
So what was their conclusion?