Axonal peripheral neuropathy: Finally, a diagnosis!

@cantab AFO - Ankle Foot Orthosis. The type prescribed for me is walk-on-flex by Ottobock. The main reason I have these is due to drop foot. As the numbness increased, the drop foot developed and at the same time, it did help with balance.

@mjmarshall - I did check out the TurboMed. The idea they fit on the outside of the shoe is interesting. Did these give you more of a "bounce" when walking and is the quality of your balance the same?

What to do now really depends on your symptoms and lifestyle. In my case, I had to give up long distance cycling due to balance issues and then I had to find new ways to structure and give meaning to my life. Art has helped. Pain management? Not so much. I think the biggest obstacle to your new way of life is the struggle of accepting how your body works now and learning to look forward, not back. And doctors....ack, so many doctor appointments trying to find the meds that may give you relief without unwanted side effects. Wishing you the best of luck. A new life awaits you.

Hmmm. I was given a tilt table test in 2009 by a neurologist who was intent on diagnosing the cause of my “brown outs”—near fainting spells, which had been happening for years.
I “passed” the test by passing out fully, with low heart and blood pressure rates. The diagnosis was veso vegal syncope. Another name for it I learned after also developing axonal PN was “autonomic neuropathy.” I was given midodrine in 2009 for the syncope, which worked until my heart slowed down to bradycardia four years later.
I have had no further medication for that specific diagnosis since.
However, there is a test for autonomic neuropathy, or syncope, but as the nurses told me, it is usually the last test on the list for figuring out its ephemeral symptoms.
Mention it to your neurologist. Hope this helps:

Did you get results back on sweat test-? We have been waiting 4 plus weeks! So far skin biopsy says no SFN…
Any ideas? Pain numbness in feet etx and all over body!

Thanks to those that replied to my question about testing for autonomic neuropathy

Yes - balance is equivalent with both types of AFOs. I have horrible balance without my TurboMeds (use a walker when I don’t have them on). I don’t even need to use a cane when I wear my TurboMeds. There is more flexibility in that you can rock on your foot (heel to toe) when you are walking. Not only that I don’t have to wear larger shoes to accommodate AFO insertions.

@mjmarshall - These sound more and more interesting. Sounds like more flexibility than what I am using. If I don't have the AFO's on, I need a cane for balance and with them on, no cane needed. I will check into these, thanks for posting the info, we sure can learn a lot from one another and in some cases, even more than we learn from the docs. We live with this firsthand and sharing our experiences, good and bad helps all of us in dealing with PN. Stay safe, keep moving. Ed

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.

Yup...I agree. Attitude is just as important as doctors and drugs.