Have you been Dx'd with autonomic neuropathy?

Coping & Support
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If you’ve been diagnosed with autonomic neuropathy, I would love to hear about your experience with it.

I don’t have a confirmed Dx yet, autonomic neuropathy is just the latest endo’s suspicion, but the best likelihood anyone’s come up with yet. My symptoms are pronounced (and not exactly conforming) during the last 16 months but may go back 20+ years depending on which symptoms you include. Tests are upcoming. I’ve also looked into maybe I have amygdala-hypothalamus-pituitary issues. Or maybe this is all just long-term pile-on from my chronic severe hyponatremia (which goes back to amygdala-hypothalamus-pituitary anyway). Who knows, maybe all of the above??? ? ?

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Yes Noz @theNoz, I was told this is one of my long-term diabetes conditions; this was 10 years ago following cardio-vascular surgery. The “cause” has never been explained beyond that it usually only appears in persons with long-term diabetes.

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Thanks, Dennis. It makes total sense to me, and if a single Expert I’d ever consulted in the last 20 years about … , well… I don’t know that anything would be different except I wouldn’t be so surprised now. I would have heard of it. Just once in 20 years seems like not too much to ask! Sorry. My intent was not to whine.

Oddly, my heart seems unaffected yet.

Do you do anything for it, besides maybe exercise? The NIH says, keep your blood sugars down, well, I’m trying but I seem to go berserker high all of a sudden for no reason while also feeling randomly stressed. Yet my last 2 A1c’s were 6.3 and 6.6, so the NIH is not helping.

I don’t even have the diagnosis yet, just the hypothesis, it only fits to a tee is all.

1 Like
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Hi NOZ, Yes I have also heard better control is essential in the treatment. If this does progress to full foot neuropathy the good news is you qualify for free orthpedic shoes covered my medicare.
I highly suggest not waqlking barefoot around the house especially on HARDWOOD FLOORS.
Frequent lotion should help some.
HARDER

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David @TRYHARDER , don’t confuse peripheral neuropathy, a condition that affects feet and other body extremes, with Autonomic Neuropathy. They sound similar but are entirely different conditions.

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Hi, @TRYHARDER - What Dennis said. There are 2 things that make Autonomic Neuropathy similar to peripheral neuropathy - that diabetics tend to be afflicted more and they each involve parts of the nervous system. The similarities end there.

Autonomic Neuropathy involves all those things inside your torso - primarily heart and G/I system, but potentially everything else - and is a lot harder to diagnose, as I keep hearing over and over. It’s also harder to know for sure what it’s affecting.

I suspect it is the cause of lower-system intestinal difficulties I’ve had for 20 years, but that’s hard to say because I also have severe chronic hyponatremia, which only just finally (after 15 or 20 years!!!) got diagnosed 2 weeks ago as SIADH - Syndrome of Inappropriate Andi-diuretic Hormone Secretion. Why everyone leaves “Secretion” off of the acronym I don’t understand.

So far, in trying to root out the Autonomic Neuropathy, we’ve tested the behoozis out of my endocrine system and heart, as well, and I’ve gone over and over things with my G/I, had a litany of lab tests - even, just in case my liver is finally objecting to a med I was taking around 2000 that turned out to have potentially permanently damaging effects (OH GREAT!) - and we are not running into the problems typical of those systems being impacted by Autonomic Neuropathy.

It’s possible I “simply” have reached the point of my SIADH degrading to the point where I have to fight it with any tool in or out of the toolbox. UGH. Increased protein (I thought I had already increased it!) and supplementary Urea. The doctor said, when he added Urea, “it tastes disgusting”. Think the smell of a litter box, you’ve got the idea.

But ADH, Anti-diuretic Hormone, makes the body retain more water, and normally there are 3 body parts - your brain, your heart, and your kidneys - all monitoring sodium level and increasing or reducing ADH to increase or reduce the amount of water your kidneys retain, which causes your blood sodium to be diluted (hyponatremia). SIADH is the brain going a little berserkers in secreting too much ADH, so my sodium levels have been abnormally - even hazardously - low for at least 15 years.

Anyway. I wouldn’t wish Autonomic Neuropathy on any diabetic. But the SIADH is the side-effect of another med I take that has nothing to do with diabetes, although people with diabetes are slightly more likely to get SIADH. I just have 3 causes of SIADH, one of them being a few small TBI’s in my lifetime (most recently 2018), so don’t put SIADH in your pocket of Diabetic Things to Worry About.

…That is, unless your blood sodium drops significantly for a prolonged period, but you’d better bet a doctor doing a Basic Metabolic Panel is going to be jumping on that like a hawk.