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Autonomic Neuropathy


futurehope
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Forgive me if this has been covered already. After reading an article given to me by a contributer to this forum, I'm suspecting that my POTS is caused, in part, by autonomic neuropathy.

I get the purplish mottling in arms and legs upon upright posture. My POTS came on relatively gradually. My sweat test showed neuropathy on my toes. My norepinephrine went to 699 upon upright posture which is high (above normal), but not as high as some people with hyperadrenergic types of POTS.

Is this autonomic neuropathy progressive, and progressive to what outcome? In my case, it sure looks like over a very long time, I've become gradually worse. I could compensate for the POTS for years to the point of being relatively normal, until I was 51 YO.

I will ask my doctor at the next visit, but I thought that some well-informed person here might know.

Thanks.

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Well I was dx with autonomic neuropathy. Mine came on basically overnight. My neurologist says it can go away, get better, stay the same, or get worse. I was like geez thanks for the insight.

Anyways she said with proper meds and exercise she has seen alot of people improve.

I have improved in some areas (gastroparesis) while declining in others (POTS) so I'm unsure the outcome.

My dx was based on ttt, breathing test and sweat test. I think the non sweating is what determined AN.

I'll be interested to see how others reply.

She sometimes calls in autonomic neuropathy and sometimes autonomic dysfunction so I think it's all the same as dysautonomia.

Dayna

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My son is Dxed with an autonomic neuropathy, affecting his ability to digest food, maintain BP, HR and body temp. At times, he was uanable to eat, fainted constantly, had a body temp of 95 and a HR in the 30's. With treatment, he's gotten MUCH better. He's 13 and actually attending school full-time. He hasn't missed a day this 1st quarter and somehow managed to squeeze out straight A's. Excuse my proud Mommy talk :) He was sooooo sick, I thought he had no future. I just want to illustrate to you how much things can improve. There is so much hope! A really good doctor, who is willing to tweak your regimen as needed, is key.

Best of luck to you!

Julie

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autonomic neuropathy isn't technically synonomous with dysautonomia. it CAN be but not always, i.e. someone can have autonomic dysfunction and not have any actual neuropathy. neuropathy indicates nerve damage. that said, in the land of dysautonomia, many times the terms are used interchangably based on assumptions. but one can have POTS (or other autonomic dysfunctions) without technically having neuropathy. a tilt table, for instance, can point toward autonomic neuropathy but technically doesn't specifically diagnose it. like someone else mentioned, a sweat test can. and one can have some degree of autonomic neuropathy without having systemic symptoms as such. for instance one could have autonomic neuropathy only in the GI tract causing gastroparesis, pseudo-obstruction, etc. a lot of semantics though when often (if not always) treatments will be the same and based on symptoms.

regarding its course over time, like others have said it can go in any direction. it is not generally considered progressive when associated with POTS, NCS, etc. of course that doesn't mean that some individuals can't get a bit worse over time. but many also improve. and perhaps the most have ongoing ups & downs with treatment/lifestyle changes helping tremendously.

there are, however, some types of autonomic neuropathy that are considered progressive, i.e. some types of autonomic failure. i have a progressive diagnosis/ prognosis based on multiple factors but it is VERY unusual to have this be the case.

hope this helps,

:) melissa

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