NeuroTalk Support Groups - Autonomic Peripheral Neuropathy

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- - Autonomic Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/198703-autonomic-peripheral-neuropathy.html)

Quote:

Originally Posted by andybonse (Post 1041583)

I have only had the ANA, Lupus, thyroid/thyroud antibody autoimmune blood tests, inflammation markers and Lyme all negative.

My sweating is decreased in my opinion. I dont really have symptoms of an autoimmune disease, I do have signs of Ehlers danlos type 3 I guess, but I dont see how people randomly get dysautonomia from it, only some sort of nerve damage. I am not diagnosed with neuropathy although I dont see how one can have dysautonomia without it...

Because my bp stays normal, I guess theres only damage to certain parts?

Tilt table showed a quick drop and recovery in BP not a huge drop either, valsalva was perfect, and sinus arythmia, hyperventilation etc, pupil dilation is perfect. So it seems my autonomic system is working, just seems the signals probably dont get to a certain area.

Now if I stand up and my hr goes up, if I bend over with legs straight it slows down, so the splanchnic area is my suspicion.

Sometimes I stand and my HR wont go up much but ill still feel crap, or not as crap, I dont get how it can work then not work kind of.

I'm scared of it getting worse and want to prevent any life threatening nerve damage etc. Is there any test in your opinion to get to check for autoimmune problems?

Your doctor thinks you have Dysautonomia? Postural Orthostatic Tachycardia Syndrome? Do you have a heart rate monitor for your wrist? Did you get the A1c test?

Quote:

Originally Posted by Sallysblooms (Post 1041660)

Your doctor thinks you have Dysautonomia? Postural Orthostatic Tachycardia Syndrome? Do you have a heart rate monitor for your wrist? Did you get the A1c test?

Thanks, my autonomic neurologist professor mathias in London tested me for it and I do infact have dystuonomia / pots.

My main cause is EDS hypermobility which doesnt effect me until this autonomic crap, an artcile of research has just been released showing EDS caused autonomic dysfunction is infact neuropathy!

http://www.semarthritisrheumatism.co...292-8/abstract

So, I dont have an autoimmune disease especially after checking, I mean I will do some more tests just incase, but it seems some how our nerves get damaged more easily with the EDS so hopefully can heal.

I need to know what supplements to be using to heal them, I am also going on paelo diet for maximum nutrition.

Quote:

Originally Posted by Sallysblooms (Post 1041660)

Your doctor thinks you have Dysautonomia? Postural Orthostatic Tachycardia Syndrome? Do you have a heart rate monitor for your wrist? Did you get the A1c test?

Whats the a1c test?

thanks

--is for glycated hemoglobin, a long term measure of glucose levels in the blood, considered to be a more accurate long term measure of those levels than just a random fasting blood glucose level.

The test measures the percentage of red blood cells that have hemoglobic glycation; since, once red blood cells have had their hemoglobin glycated, they stay that way until their demise, and since red blood cells have a life span of about two three months, this percentage is a reflection of average blood glucose levels in the body over the past few months. Generally, a level of 4 to 5.6 percent is considered normal/optimal; levels from 5.7 to 6.4 are considered to reflect impaired glucose metabolism, and levels of 6.5 percent and above frank diabetes.

The test results can vary and be somewhat less accurate if one has high turnover of red blood cells, which is hereditary, if one has experienced recent blood loss such as through surgery, if one has chronic liver or kidney disease, or if one takes high dose vitamin C.