Axonal peripheral neuropathy: Finally, a diagnosis!

I was diagnosed with CIAP (chronic idiopathic axonal polyneuropathy) at Loma Linda Medical Center in Loma Linda, CA. After much testing including a bunch of blood testing and EMG and other tests I now what to call it but not what to do about it. I don't have diabetes and there is only tingling, but no pain. Balance is the problem.
It is not better after a lot of PT, treadmill and at home exercises recommended by PT. I tried to get into the Mayo balance team program in Scottsdale, AZ, but was told they were booked for the next 6 months with no waiting list and would not make an appointment beyond 6 months. Recommended by the appointment clerk to try every month to get an appointment. Meanwhile, has anyone out there tried any programs for balance using a rotary chair test, posturography, electronystagmography vestibular test? I am turning 80 next month and do not know what to do next.
Bob B.

Has anyone tried Amla, which is an extract of Indian Gooseberries. I know that sounds like more snake oil but the have at least done some scientific research albeit on mice, but there were some positive findings. There is a lot of anecdotal reports that it does work. Make sure that you get it from Auniva since there are Amla products that have not been produced correctly and therefore are inactive. I am in the second week of testing and I have found some minor mitigation of the discomfort in my feet.

@blowerk1216 search of Connect lists posts from a few members who have shared experience with AMLA - https://connect.mayoclinic.org/search/comments/.

@ray666 Ray, like others, parallel symptoms are more common than we may think. Imagine how many other people with PN have no pain, poor balance, numbness and are not on the Connect for PN. We hear from those who participate here but what about those that don't. The more I read up on this disease, I am becoming more confident that many cases are genetic related going back how many years. Case and point: I have a second cousin who has PN, he has pain, poor balance, numbness. Oh yea, idiopathic. Diagnosed at age 65. I too was 65. Coincidence?? Possibly one of your great great grandparents started with PN in their 60's and only lived until 70. To them, it was just a little numbness in the feet. And the damn thing skips generations. Also, what percentage are medication related when these meds didn't exist 60 or 80 years ago and let's not rule out causes of PN environment related. The list goes on and on. Parallel symptoms with causes unknown. By the way, with my cousin, his dad and my grandfather were brothers....smoking gun??

@njed Ed– If you need more evidence of a possible genetic tie-in: my brother, Bill, who died five years ago. Bill was my only sibling and 14 years older than me. Bill had horrendous difficulty walking, especially in the last decade of his life. My sister-in-law tells me Bill's doctors would use the word "neuropathy," but my brother––who was "all man" in the most self-defeating sense of that phrase––refused to pursue a more nuanced diagnosis. "Naw, I just got bum feet," he'd say. So who knows? When I read your post, I thought immediately of my brother. Others in my family. even in my extended family? I can't be sure. My mother's side of the family––they all died of this or that or some other thing. I can't recall any with PN-like symptoms. I never knew many on my father's side of the family. They were all withdrawn from the planet before I was born, all withdrawn––according to family legend––by demon rum. –Ray

@ray666 Yep....possible genetic on your side. I did have CMT test done in 2019 and nothing abnormal. I had all the classic signs, according to the neuro doc 7 years ago. He was a little surprised there were no markers. Steady as we go!

@njed Ed– I had some sort of DNA-ish test done a couple of years ago. I can't be any more specific. All I recall is that it took a couple of weeks to get the results back, and when they came in, the neurologist said, "No, Ray, there's nothing that I see in these results that sheds any light on your PN." Ah, well! On we go. –Ray (@ray666)

@njed
I hadn't stopped to think about family history. But between what you and @ray666 shared, my story seems to fit in (to the degree that I knew any of my ancestors, which amounted to one grandmother). What I do know, is that being mostly Swedish along with Irish and English, my kinspeople would have been stoic in nature and personality, refusing to admit to "weakness" -- notably unlike the more demonstrative Italians or Greeks. Seems like it's a piece of the same puzzle we're all trying to put together, doesn't it?
Here's to a very good week ahead ~
Barb

@ray666 With the symptoms, likely it was also CMT. My test results also took 3 weeks to come back. At the time, the University of PA got a grant from the Fed Government for the testing, no cost to me or my insurance. Since 2019, I've heard the genetic testing has expanded more types of testing with well over 100 different genes associated with PN. I have zero interest in further tests.

@bjk3 Oh Barb....you are right, we all have a piece of the puzzle, but the pieces don't make sense, they don't fit. And, you make a good point, not having full family history of our families, we really don't know what they experienced. I was told by a family member that my great grandmother had hammer toes as did my grandmother. As a kid in the 50's I wondered why she would wear soft shoes and cut the top off to give room for her toes. Another piece of the puzzle? Ed