Idiopathic Autonomic Neuropathy

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)

Hi Tia @cctee, I would like to add my welcome to Ray's and others here on Connect. I also have idiopathic small fiber neuropathy that was diagnosed at Rochester Mayo by a neurologist using EMG and nerve conduction tests along with a physical exam. Mayo Clinic has some information here on how autonomic neuropathy is diagnosed - https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836.

Hi Ray and John, Thank you for the welcome. First, symptoms: orthostatic hypotension and postprandial hypotension, urinary problems, gastro problems, tremor, overheating and sweating, dry skin insomnia, Restless legs, anxiety, the bottom of my feet are tingly, and one hand falls asleep at night every night and I’m not lying on it. Weird, right? Actually, the reason I was tested with a Qsart test is I was convinced I had Multiple Systems Atrophy, and frankly, the IAN dx has not really made me convinced that I still don’t have MSA. I had a Syn-One skin biopsy that was normal and that is suppose to be a 95% confidence rate in the test which is for PD, MSA, Lewy Body Dementia. So here, I am still worrying about what has caused autonomic neuropathy!!!! MSA, perhaps? So tired of worrying. Thanks for all the info, guys, I’ll look at that link. And, Ray, way to accept, create a plan, and move on. John, what symptoms do you have with small fiber neuropathy? Do you know what caused it? Thanks again, oh and by the way I meant to type TYIA. Thank you in advance, how uncool am I? 😂

Hello,
So sorry about your condition.
My best suggestion for you is to find a knowledgeable neurologist who can order the correct tests to help diagnose what you may have.
Wishing you the best.
Take care and have a serene weekend ahead,
gus

@gus0557
Thank you, you have a good weekend too. 😊

Hi @cctee, The neurologist that diagnosed me suspects it may be hereditary but they really don't know a cause. I'm wondering if it might be due to being tagged as pre-diabetic most of my life before I really knew what that meant and none of my primary care doctors that told me I was pre-diabetic told me about the metabolic syndrome which has a lot of ties to different neurological conditions. So I suspect that could be a cause and I've worked on changing my diet and lifestyle to lose the extra weight which has helped me with other conditions and may also be helping me slow down any progression of my neuropathy. My symptoms have always been numbness with some tingling but no pain that started in my toes. I do have similar issues with my hands but attribute that to carpal tunnel syndrome.

One site that has really helped me along with all of the discussions here on Connect is the Foundation for Peripheral Neuropathy. If you haven't seen it, it's a good place to start learning more about living with neuropathy - https://www.foundationforpn.org/living-well/.

@johnbishop , thank you so much, I will check this site out. I like things tied up in neat little packages that I can understand, and this is just perplexing me. Btw, I love your beautiful dog. My husband and I have had dogs in our house consistently for 40 years until we lost our last one in 2024. I suspect a dog would cheer me up a bit right about now. Thanks again for responding. 😊

The dog actually belongs to our daughter. I have a little black cat that goes into witness protection every time she brings her 2 dogs over. I usually lock her up in our bedroom until the dogs are gone.

Totally get it. Our little Maltese was such a watch dog that it was hard to have company. I miss her terribly. Turns out she was the very best company. Haha