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barbie86 08-30-2015 08:01 AM

autonomic
 
Hello. Has anyone autonomic neuropathy? When did it started after first symptoms started?

icelander 08-30-2015 10:16 AM

Quote:

Originally Posted by barbie86 (Post 1167015)
Hello. Has anyone autonomic neuropathy? When did it started after first symptoms started?

I have that, the first symptoms started about a year and a half after I first noticed a numb spot on my right foot. My bladder barely works now and I have constipation even though I gorge on fiber and liquids.

stillHoping 08-30-2015 02:08 PM

Quote:

Originally Posted by barbie86 (Post 1167015)
Hello. Has anyone autonomic neuropathy? When did it started after first symptoms started?

Yes, my autunomic problems started many years before the sensory symptoms.

barbie86 08-30-2015 06:56 PM

Thanks. And what tests are there for autonomic? Can you die from autonomic?

en bloc 08-30-2015 09:17 PM

My autonomic neuropathy was one of my first major problems.

There are many tests for autonomic dysfunction...all depending on what your symptoms are (which you don't mention). Tilt table will determine whether there are any POTS or orthostatic hypotension affecting your heart rate or BP. There is also 24 hour BP monitoring as well as holter monitors for heart rate.

If you have GI problems, then gastric empty study is available.

There is QSART and skin biopsy to check for general autonomic fiber damage and/or sweat dysfunction.

Sure, you can die from autonomic neuropathy, but it all depends on your level of autonomic failure, the cause, symptoms, and tolerance for medications. But most people can find ways to manage their autonomic dysfunction with medication, life-style changes, etc.

icelander 08-30-2015 09:30 PM

Quote:

Originally Posted by en bloc (Post 1167238)
My autonomic neuropathy was one of my first major problems.

There are many tests for autonomic dysfunction...all depending on what your symptoms are (which you don't mention). Tilt table will determine whether there are any POTS or orthostatic hypotension affecting your heart rate or BP. There is also 24 hour BP monitoring as well as holter monitors for heart rate.

If you have GI problems, then gastric empty study is available.

There is QSART and skin biopsy to check for general autonomic fiber damage and/or sweat dysfunction.

Sure, you can die from autonomic neuropathy, but it all depends on your level of autonomic failure, the cause, symptoms, and tolerance for medications. But most people can find ways to manage their autonomic dysfunction with medication, life-style changes, etc.

Frankly at my age dying from it sounds better than living with it.

en bloc 08-30-2015 10:34 PM

Quote:

Originally Posted by icelander (Post 1167245)
Frankly at my age dying from it sounds better than living with it.

It's really quite manageable. I have severe autonomic dysfunction and have adjusted to medications, life-style changes and simply learning to live with a different level of function than most other people.

en bloc 08-30-2015 10:38 PM

Quote:

Originally Posted by icelander (Post 1167043)
I have that, the first symptoms started about a year and a half after I first noticed a numb spot on my right foot. My bladder barely works now and I have constipation even though I gorge on fiber and liquids.

If your constipation is from autonomic dysfunction, than you should focus on motility, not just fiber and water. Domperidone can help and they now find that Mestinon (for myasthenia gravis) can be helpful for GI autonomic problems.

Urinary symptoms are a bit harder to treat...have you seen a specialist in neurogenic bladder for help with this?

icelander 08-31-2015 06:19 AM

Quote:

Originally Posted by en bloc (Post 1167264)
If your constipation is from autonomic dysfunction, than you should focus on motility, not just fiber and water. Domperidone can help and they now find that Mestinon (for myasthenia gravis) can be helpful for GI autonomic problems.

Urinary symptoms are a bit harder to treat...have you seen a specialist in neurogenic bladder for help with this?

I avoid specialists as a general rule and I'm better off for it IMO. My GP has been better than all of them put together. So no, I've seen a urologist to consider options and that's all. That's all I'll likely do as the urologist was a rare exception and was open and honest IMO. He basically said if it's a neurogenic bladder then there isn't much to be done other than self catheter. He told me he'd advise strongly against the permanent ones.

I seem to be still hanging in with the digestive issues by eating a basically raw food diet with lots of OG sprout salads. Constipation is still intermittent but thank you for the suggestions. I'll check them out and present them to my GP for consideration.

Healthgirl 08-31-2015 07:10 AM

My first autonomic symptoms started a year before the major sensory ones. I would have random times of vertigo, orthostatic hypertension which just kept getting worse, palpitations, agitations, confusion, and an electrical surge feeling just as I was falling asleep. I started noticing that my muscles wouldn't recover from work outs and I became weaker and had some random numb spots in legs and tingling in left foot and in my hands when elevated. It took a year for all this to develop into full body and face sensory pain and symptoms.


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