Idiopathic Autonomic Neuropathy

@cctee , I can relate to your frustration. I share some of your symptoms. I have inconsistent diagnosis opinions…..so….I have had intermittent symptoms….others more persistent. Now, some new issues….so, I can’t provide much info. I’m still trying to figure it out and do the best I can for overall health. Oh, I have long term type 1 diabetes, though well controlled. I’ve had 2 neurologists say I don’t have neuropathy. Lol

What are your primary symptoms? I think I have a neurodengenertive disease causing most of mine, but no answers to that either.

@cctee , I can relate to your frustration. I share some of your symptoms. I have inconsistent diagnosis opinions…..so….I have had intermittent symptoms….others more persistent. Now, some new issues….so, I can’t provide much info. I’m still trying to figure it out and do the best I can for overall health. Oh, I have long term type 1 diabetes, though well controlled. I’ve had 2 neurologists say I don’t have neuropathy. Lol

I’ll also add that my ENT diagnosed me with post covid syndrome due to smell/ taste disorder. All my symptoms hit suddenly after covid, but IDK. It’s difficult to figure it out. Smell returned but living with bitter taste that is slightly better, paraesthesia in both feet. Slightly numb feet with full sensation. Very annoying. Balance pretty good though slightly off. One intermittent quarter size hot spot on one foot that hasn’t surfaced in over a month….yaay. Several podiatrists said not neuropathy. Awaking to very painful numb hands. Only if I lay on them. Hand expert believes carpel tunnel but not sure.
First neuro viewed emg, mri and says not neuropathy. Second neuro diagnosed vitamin b12 deficiency and believes restoration of it will resolve issues. He’s moved. Hmmm….idk. B12 takes a while to restore…..

My endocrinologist says it’s common for long term diabetics to get neuropathy, but isn’t sure if that is my problem.

I used to have body wide fasciculations and was certain I had Parkinson’s, MS or ALS. Didn’t according to neurologists.

My last mission is to get spine scan to rule out that causing my symptoms, but I have hurt my ankle and must address that first. Lol. But, other than those things, I feel great and probably better than ever in my life. Seriously. Best of luck to you. Please post what you find out.

@celia16 Have you been told you have autonomic neuropathy? I was dxed with it form a Qsart test. I do have lots of autonomic symptoms. So frustrating. Such a vague area of medicine that it feels like no answers.

@celia16 Have you been told you have autonomic neuropathy? I was dxed with it form a Qsart test. I do have lots of autonomic symptoms. So frustrating. Such a vague area of medicine that it feels like no answers.

There is a good screening history questionnaire
for autonomic dysfunction called COMPASS-31.
The score of positive answers helps in diagnosing
dysautonomia.
Have you seen a neurologist? Your age and any autoimmune symptoms and medications are all important in sorting it out. Do you have low blood pressure?
Mine is due to psoriatic arthritis . Investigating a trial of
treatment for sleep apnea to see if that helps.

Welcome, @cctee!

When I was first diagnosed (in the summer of 2022), all I was told was "idiopathic perripheral neuropathy." My only symptom back then was poor balance. No pain. Since, I'm managed to refine my diagnosis to "chronic idiopathic axonal polyneuropathy," or CIAP. My only symptom is still poor balance, but still without pain.

You'll note that one word has carried over: "idiopathic." I was told at the outset that it was highly unlikely I'd ever know what caused my neuropathy. It took me a while to accept that, but today I do, and instead focus my attention on doing balance exercises and rebuilding lost core and leg strength, all to keep my already poor balancd from worsening.

Can you tell us something of the idiopathic autonomic symptoms your experiencing? It would help to know a bit more about your particular neuropathy,

Best wishes,
Ray (@ray666)