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Idiopathic Autonomic Neuropathy

Posted by cctee @cctee, Jul 17 12:50pm

Anyone here have experience with this diagnosis. I am not a diabetic, and am totally confused. I have a bunch of autonomic symptoms so I don’t doubt it, I just wonder why. And, what doctor do I see to help me figure out what caused it and what I can do about it. TIA

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cctee | @cctee | Jul 21 8:23am
In reply to @celia16 "@cctee , I can relate to your frustration. I share some of your symptoms. I have..." + (show)
Profile picture for celia16 @celia16

@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

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

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celia16 | @celia16 | Jul 21 10:59am
In reply to @cctee "What are your primary symptoms? I think I have a neurodengenertive disease causing most of mine,..." + (show)
Profile picture for cctee @cctee

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

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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.

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cctee | @cctee | Jul 21 11:04am
In reply to @celia16 "@cctee , I can relate to your frustration. I share some of your symptoms. I have..." + (show)
Profile picture for celia16 @celia16

@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

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@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.

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cctee | @cctee | Jul 21 12:03pm
In reply to @celia16 "I’ll also add that my ENT diagnosed me with post covid syndrome due to smell/ taste..." + (show)
Profile picture for celia16 @celia16

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.

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I hope you can get them all sorted out, and feeling great really should rule out most everything that is super bad. Same with you, let me know how you are doing. I hate anything neurological it’s always so vague and hard to tie down.

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seniormed | @seniormed | Jul 21 12:33pm

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.

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celia16 | @celia16 | Jul 21 1:26pm
In reply to @cctee "@celia16 Have you been told you have autonomic neuropathy? I was dxed with it form a..." + (show)
Profile picture for cctee @cctee

@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.

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I haven’t. Will look into it though.

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celia16 | @celia16 | Jul 21 1:48pm
In reply to @cctee "@celia16 Have you been told you have autonomic neuropathy? I was dxed with it form a..." + (show)
Profile picture for cctee @cctee

@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.

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I found this piece about that testing. Quite fascinating. I doubt I have enough symptoms to get it ordered though. I haven’t had any dizziness or blood pressure problems recently. Years ago yes, sudden drop in bp, but it runs in my family. No lightheadedness, no bladder problems. No sexual dysfunction. I did have constipation for several years that I sought treatment for. I asked neurologist and GI team about it and they said not related to neuropathy. Lol. So, idk. I wouldn’t mind that sweat test. I’ve never been a big sweater.
But, if I did have that what would I do different than what I do now? I eat right, workout and give my blood sugar management my all. I can’t imagine what more I could do. Oh, my constipation has improved greatly and I now am almost back to normal with no products. Just good food. So relieved. If it was autonomic neuropathy would it improve?
https://pmc.ncbi.nlm.nih.gov/articles/PMC3046462/

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celia16 | @celia16 | Jul 21 2:01pm
In reply to @seniormed "There is a good screening history questionnaire for autonomic dysfunction called COMPASS-31. The score of positive..." + (show)
Profile picture for seniormed @seniormed

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.

Jump to this post

I took the Compass-31 online test. Hmmmm….seems rather loose. Perhaps, I didn’t take the right one.

REPLY
Profile picture for seniormed
seniormed | @seniormed | Jul 21 2:03pm

Good reference. I will study that.
If the cause of the autonomic neuropathy is autoimmune there is a chance for remission and treatment
if needed.

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storoe | @storoe | Jul 21 2:28pm
In reply to @ray666 "Welcome, @cctee! When I was first diagnosed (in the summer of 2022), all I was told..." + (show)
Profile picture for Ray Kemble @ray666

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)

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When I was first diagnosed the neurologist said that idiopathic meant the patient was pathetic and doctor was an idiot.

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