Autonomic Neuropathy

[MamaTrain]

Hi Guys,

I was researching neuropathy for my best friend and found an article on the sub types of neuropathy. I was shocked when I read this as it sounds EXACTLY like dysautonomia. I found this Mayo article and wanted to share it and see what you guys think. I wanted to add that I have been doing this for 2 years and I honestly never had this referred to in any of my reading!

KC

Check out the article....

http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544

[sugartwin]

Autonomic neuropathy is dysautonomia. But not all dysautonomia is necessarily autonomic neuropathy. As I understand it, autonomic neuropathy refers to actual damage to the nerves and by extension, usually quantifiable damage...gastroparesis counts, but irritable bowel would not. When my doctor found that my feet and part of my lower legs didn't sweat at all, he added 'autonomic neuropathy' to my chart.

[Sallysblooms]

The Autonomic Neuropathy is often the problem. That is my diagnosis. The nerves control the body functions, blood vessles, muscles etc, and then do not work right. I am working on it with Lipoic Supreme. ALA. It is really good. Healing my nerves.

[HopeSprings]

I love this site! I was just researching autonomic neuropathy yesterday and was going to ask this question myself. I have severe burning pain in my feet-- EMG testing was normal. When I looked up "burning feet" I came up with 'small fiber neuropathy' which EMG testing doesn't pick up on. From there it went into autonomic neuropathy. Then I started wondering if it's possible that I have small fiber neuropathy which is causing the autonomic symptoms (POTS). My understanding is that a skin biposy can confirm this daignosis. Anyone with information on this -- please educate!

[rach73]

Hi,

Thank you for posting this! I was going to start a post on this today. Not your quote from the Mayo site - which was good, I have awful burning pain in my left leg and both feet. The pain was so bad last night I couldn't have my duvet cover touch my left leg at all. Its still burning now but not as bad.

I've had this burning for a few years always my left leg I usually only get it at night, rarely during the day. This is the worst episode I have had.

So thank you for posting this.

Rach x

[MamaTrain]

Thanks for your replies guys! I'm glad I'm not the only one wondering about this! Sallysblooms- What is Lipoic Supreme ALA? I'm willing to try just about anything once and if it works that would be a plus all around!

[mwise]

Sugartwin said it well. That is my dysautonomia diagnosis. I take Alpha Lipoic Acid 500mg qd for nerve health. I am assuming that is what Sallysblooms is taking a similar form-brand of Lipoic Acid. I got mine at the local health food store. It is recommended as an alternative treatment for Autonomic Neuropathy along with Florinef, Mestinon and/or Midodrine.

Google Mayo clinic on Autonomic Neuropathy-gives a good explanation:rolleyes:

[sugartwin]

I love this site! I was just researching autonomic neuropathy yesterday and was going to ask this question myself. I have severe burning pain in my feet-- EMG testing was normal. When I looked up "burning feet" I came up with 'small fiber neuropathy' which EMG testing doesn't pick up on. From there it went into autonomic neuropathy. Then I started wondering if it's possible that I have small fiber neuropathy which is causing the autonomic symptoms (POTS). My understanding is that a skin biposy can confirm this daignosis. Anyone with information on this -- please educate!

Hopefully someone else will weigh in. My background is not in the medical sciences, so this is the "quick and dirty" version.

The nervous system is broken into central and peripheral and from there into the somatic (voluntary) and the autonomic (involuntary).

EMG cannot detect damaged nerves in charge of the autonomic nervous system, only those in charge of the somatic nervous system. (I'm not sure why doctors rush to give EMGs to patients who are displaying purely autonomic symptoms, except for the fact that some disease, like Guillan-Barre damage both kinds of nerves. )

Because autonomic nerves lurk close to the skin's surface, a skin biopsy can diagnose this kind of neuropathy. However, this is not the cause of all dysautonomia, which is why I said the terms are not interchangeable. Not everyone who has dysautonomia has damaged autonomic nerves.

[HopeSprings]

"Because autonomic nerves lurk close to the skin's surface, a skin biopsy can diagnose this kind of neuropathy. However, this is not the cause of all dysautonomia, which is why I said the terms are not interchangeable. Not everyone who has dysautonomia has damaged autonomic nerves. "

Sugartwin --Ok I don't mean to be dense here. Are you saying that autonomic neuropathy can be the cause of dysautonomia? I guess what I am really getting at is -- would it be worth pursuing going to a Doctor and asking to be evaluated for Small Fiber Neuropathy (hopefully getting a skin biopsy) and then -if that was positive- possibly conclude that this was causing the Dysautonomia?

[sugartwin]

Sugartwin --Ok I don't mean to be dense here. Are you saying that autonomic neuropathy can be the cause of dysautonomia? I guess what I am really getting at is -- would it be worth pursuing going to a Doctor and asking to be evaluated for Small Fiber Neuropathy (hopefully getting a skin biopsy) and then -if that was positive- possibly conclude that this was causing the Dysautonomia?

Yes, that's what I'm saying (You're not dense! I'm just not good at explaining.) And I think it would be worth being evaluated for. In the end it's a personal decision, but it can help focus treatment decisions. I think it's ridiculous that a doctor would not consider searching for the cause of something like POTS...

[Sallysblooms]

Train Boys, I take 600mg of Lipoic Acid Supreme. Doctors carry it. It has taurine and boitin as well as Alpha Lipoic Acid. My feet are fine now after taking it so I have to figure it is healing nerves to the heart and muscles etc. at the same time. My doctor told me how much to take. She told me I can increase so I will. I take many supplements but she helps me with all of it, I don't just take them on my own. I used to, but the dose and brand is hard to get right alone.

I didn't have Peripheral Neuropathy, but I think it was starting. The nerves were affected for sure. Starting the Lipoic Supreme early was so important. Started to feel a difference in about three weeks. It really is good, for me at least.

http://www.prohealthsolutions.com/productdetails23.html

http://patient.designsforhealth.com/Lipoic-Acid-Supreme-60

[Chaos]

I've been looking into the topic myself. I believe, from what I've been reading, that autonomic neuropathy can be a cause of POTS but is not ALWAYS present with POTS. From what I've been reading it seems like Small Fiber Neuropathy and Autonomic Neuropathy are different. Small fiber seems to account more for the sensory changes a lot of us have, like burning or shooting pain whereas the autonomic neuropathy effects the autonomic responses like sweating and cardiovagal function. I had thought they were the same entities but doing more research on them, it seems they are different, although can be related.

From Mayo it does sound like they are grouping POTS patients into different sub-types. I was recently told I was "complicated" because I had both a neuropathic and hyper-adrenergic component to my POTS. According to the neuro I saw at Mayo, what they use to treat one type will often aggravate the other type so it's a challenge to get things balanced out for those of us with more than one type.

At both Mayo and CC they told me they could use a skin biopsy to diagnose small fiber neuropathy. I believe they used the Valsalva test, heart rate response to breathing test and a couple other things to check for autonomic neuropathy. At CC the abnormal QSART was what they used to give me the autonomic neuropathy diagnosis.

[MamaTrain]

I called my doctors office and asked for a referral to a neuro here in town! It may be they will say you're doing everything already but I need to know is this the cause of my dyauto!!

KC

[potsgirl]

I have been tested for small fiber neuropathy at the Mayo Clinic in Arizona. It's the only test that is pretty accurate for that diagnosis. From what I understand, it's difficult to find a place that does the biopsies. I had to go to Mayo, and then they sent off the speciman to a specialty lab in New York. The way I understand it is that you can have POTS/dysautonomia, and then you would usually develop the SFN after that, although not everyone follows this path, of course. We're all different.

Mine started with burning feet and then extreme pain in my hands and wrists, to the point that they felt like all of my bones were broken. I'll be trying the Alpha Lipoic Acid soon. My neuro at Mayo also had recommended trying it if my Lyrica didn't work. Unfortunately, it doesn't.

Good luck,

Jana

[HopeSprings]

Yes, from what I read it is difficult to find someone to do the skin biopsy and then it has to go to a special lab. I guess this doesn't fall in the realm of routine testing. I was looking online for hours yesterday trying to find a local Doctor with expertise in this area -- I came up empty. I looked at past autonomic test results and it showed that "sudomotor" testing was done. I don't remember the test, but I guess I did it! Anyway, it said "Sympathetic skin responses show normal responses in both hands and feet to electrical stimulation and cued cough." Anyone know if this rules out neuropathy? Also, is it necessary that your feet DON'T sweat to consider neuropathy? I read that your feet won't sweat and you'll lose pain or temperature sensation. None of this applies to me, just the burning. I just don't want to go crazy trying to find a Doctor who deals with this and then go in there and they tell me I'm barking up the wrong tree.

Good luck, KC! Let us know what happens.

[HopeSprings]

Oh I forgot to ask. Does anyone else have leg pain at night laying down? I was up the half the night with really bad leg pain (in both legs from knees down to my feet), plus the burning in my feet all night. This has happened on and off since this (POTS? whatever I have)all began many years ago.

[Sallysblooms]

Yes, Chaos, small fiber and autonomic neuropathy are not the same, you do not have to have both.

[janiedelite]

Sudomotor testing refers to testing the nerves that are responsible for sweating. Vasomotor testing tests those responsible for blood vessel constriction/dilation. Sudomotor testing is done via sweat test and QSART I believe.

[HopeSprings]

Here's a good article about it:

http://www.pnhelp.org/pdf/video/Fink_Small_Fiber_Neuropathy.pdf

What is Small Fiber Neuropathy?

 Small fiber neuropathy is a disorder of the peripheral

nerves that affects:

 small somatic fibers

 autonomic fibers

 or both

 As small fibers subserve autonomic function, as well as

thermal and pain sensations, small fiber neuropathy

presents with:

 autonomic dysfunction

 lack of thermal and pain sensations

 neuropathic pain

 dysesthesias

 a combination of the above symptoms

[bruc]

Anyone have the normal test result values in autonomic function testing for sudomotor, cardiovagal, vasomotor?

Im trying to compare my results to normal values.

Sudomotor testing refers to testing the nerves that are responsible for sweating. Vasomotor testing tests those responsible for blood vessel constriction/dilation. Sudomotor testing is done via sweat test and QSART I believe.

[rach73]

Hi Naomi,

My leg pain starts as soon as I lie down, I get it in the left leg only and I've had it for years but its been dismissed by previous Dr's. As I have now changed Dr's I will bring it up with them.

The burning starts within about 30 seconds of going to bed at night. On a bad flare it will start also if I have to go to bed during the day. Its incredibly annoying a burning almost itchy feeling that is also sometimes painful. I can't bare anything on my skin when its like that. Even the pressure from my knickers on the skin of my hip can drive me insane. Its very bizarre.

I put it down to a trapped nerve as I have a lot of low back pain and pelvis pain (bones not organs) and put it down to that. I now realize it neuropathic pain. I would have never of known that until I came onto this site.

Rach

[mwise]

I was diagnosed with Autonomic Neuropathy by Cleveland Clinic Neuro doctors from a QSART, Tilt-Table and Gastric Tests. The following Tests will help with the diagnosis of Autonomic Neuropathy (straight from Mayo Clinic):

Breathing tests. These tests measure how your heart rate and blood pressure respond to breathing exercises such as the Valsalva maneuver, in which you exhale forcibly.<LI>Tilt-table test. This test monitors how your blood pressure and heart rate respond to changes in posture and position, simulating what occurs when you stand up after lying down. You lie flat on a table, which is then tilted to raise the upper part of your body. Normally, your body compensates for the drop in blood pressure that occurs when you stand up by narrowing your blood vessels and increasing your heart rate. This response may be slowed or abnormal if you have autonomic neuropathy.<LI>Gastrointestinal tests. Gastric-emptying tests are the most common tests to check for slowed movement of food through your system, delayed emptying of the stomach and other abnormalities. The testing can take various forms. One test may measure the rate at which food leaves your stomach, while another checks how well your stomach muscles relax after you eat. These tests are usually done by a doctor who specializes in digestive disorders (gastroenterologist).<LI>Quantitative sudomotor axon reflex test (QSART). This test evaluates how the nerves that regulate your sweat glands respond to stimulation. A small electrical current passes through four capsules placed on your forearm, foot and leg, while a computer analyzes how your nerves and sweat glands react. You may feel warmth or a tingling sensation during the test.<LI>Thermoregulatory sweat test. During this test, you're coated with a powder that changes color when you sweat. You then enter a chamber with slowly increasing temperature, which will eventually make you perspire. Digital photos document the results. Your sweat pattern may help confirm a diagnosis of autonomic neuropathy or other causes for decreased or increased sweating.<LI>Urinalysis and bladder function (urodynamic) tests. If you have bladder or urinary symptoms, a series of urine tests can evaluate bladder function.<LI>Ultrasound. If you have bladder symptoms, your doctor may do an ultrasound, in which high-frequency sound waves create an image of the bladder and other parts of the urinary tract.

Hope this helps.