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.

tinglefeet2 | @tinglefeet2 | Mar 7, 2023

In reply to @duquer "Have you heard about this new Sanexas treatment for the neuropathy pain? It work well for..." + (show)

Thanks, I had a conversation with my oncologist & hematologist team about Senaxus. They said it basically is TENS machine, which I have, but stronger impulses. They said to try it but felt that if TENS does nothing, not to get my hopes up. But I will look around in my area for it. Insurance doesn’t cover but if it proves to be effective it would be worth it to me.
Thanks for your tip.

duquer | @duquer | Mar 7, 2023

In reply to @tinglefeet2 "Thanks, I had a conversation with my oncologist & hematologist team about Senaxus. They said it..." + (show)

Here is a link to my story
https://connect.mayoclinic.org/comment/645606/

duquer | @duquer | Mar 7, 2023

In reply to @tinglefeet2 "Thanks, I had a conversation with my oncologist & hematologist team about Senaxus. They said it..." + (show)

The Sanexas treatment machine looks like a big TENS unit, but it is much more than that! A TENS machine is like a X-ray and RST SANEXAS neoGEN device is like getting a MRI. More powerful frequencies and over 20 different treatment programs designed for acute and chronic painful conditions.
It has lots of electrodes that send electrical impulses through the skin with the goal of regrowing nerves. It was not at all painful, just a soothing electrical massage to my arms and legs.

cantab | @cantab | Apr 7, 2023

How do I subscribe? I have Axonal PN. I belong to other groups not knowing this one exists.

John, Volunteer Mentor | @johnbishop | Apr 8, 2023

In reply to @cantab "How do I subscribe? I have Axonal PN. I belong to other groups not knowing this..." + (show)

@cantab, If you mean you want to be notified for any posts in this discussion, all you have to do is scroll to the top of the discussion and click the small notification icon (bell) and the select the option at the top and save.

cantab | @cantab | Apr 8, 2023

In reply to @johnbishop "@cantab, If you mean you want to be notified for any posts in this discussion, all..." + (show)

Thanks! I’ll try that. I did, but the bell icon only lists groups I belong to. Any other suggestions?

John, Volunteer Mentor | @johnbishop | Apr 8, 2023

In reply to @cantab "Thanks! I’ll try that. I did, but the bell icon only lists groups I belong to...." + (show)

Did you click the bell at the bottom right of the description for this discussion?
https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/

cantab | @cantab | Apr 8, 2023

In reply to @johnbishop "Did you click the bell at the bottom right of the description for this discussion? https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/" + (show)

No. I was pressing the bell at the top! I saw the bell in the 1st message on this topic and I think that worked. Thanks for taking the time to respond. There should be a note on how to do this.

John, Volunteer Mentor | @johnbishop | Apr 8, 2023

In reply to @cantab "No. I was pressing the bell at the top! I saw the bell in the 1st..." + (show)

You can find all of the "how to" step by step instructions in the Help Center here (or the link at the top right of any Connect page - https://connect.mayoclinic.org/help-center/

ch665296f | @ch665296f | Apr 15, 2023

I also have been diagnosed with axonal sensory neuropathy along with some degenerating discs and lumbar spinal stenosis. I am wondering if anyone has had any incontinence issues. Due to my prostatectomy nearly 6 years ago, I feel that my incontinence is getting worse. Any thoughts?