Info On Autoimmune Or Metabolic Causes Of Dysautonomia?

[ajw4790]

Hi!

I am exhausted, so I may have to post more of my question etc. later. But, I was wondering if those who have more info on the autoimmune or metabolic diseases causing dysautonomia could point me in the direction of info. or the best drs. to see or consult with on these topics.

I am not really even sure what all falls under the umbrella of these diseases? Autoimmune- I guess MG, RA, Lyme, Thyroid (Graves, Hashimotos etc)?

Metabolic- thyroid, adrenal etc?

I was told by a dr. that these may be more of the way to look now with some of my odd test results, family history, and other personal quirkiness.

Does anyone have weird skin patterns (I think what the dr. was referring to was the hair growth pattern- or lack there on the arms.)??? Could be neuropathy related?

Also, my sis was told she had the bones of someone ten years older after surgery (they actually saw the bone)- anyone else have this kind of a problem?

For those who have neuropathy, what is the extent of it? (i.e. how proximal does the sensory loss etc. go? for autonomic- what all is affected and to what extent?) I have a better idea of how many peoples ANS neuropathy affects them, but not as much for the sensory loss.

Recently found that my sensory loss even includes part of my hip. Anyone else have odd patterns of sensory loss? Mine do not fully correlate with dermatome levels etc.

Thanks!

[pat57]

I am getting this test, soon

http://content.nejm.org/cgi/content/abstract/343/12/847

I have an undetermined auto immune disorder, none of the issues you mentioned. I have had all the usual tests and I test positive (3x normal) for rheumatoid arthritis. BUT I don't have water on the joints or swelling, thus I don't have RA. I have had hepatitis C for over 30 years, this is the cause. My symptoms are excruciating (brief) pain in the hands with vasospasms. (Raynaud's is ruled out) What we are trying to determine is if has caused autonomic auto immune as well.

[ajw4790]

Thanks for the info. I had run across that link. I was not sure, but I have had a ACh Receptor (muscle) Binding AB test, but I was not sure if it was the same thing? That was negative.

I have still been looking for more info. and trying to figure everything out... Some things don't add up it seems... But, that is me!

[MNsue]

I have POTS and neuropathy that affects my left side. I will have sensory loss and weakness in the left side of my face, moving down my shoulder into my left fingers, my left hip, and numbness in my left foot and ankle. I also have tremors that seem worse when my POTS symptoms are bad.

I have worked with an immunologist for the last 2 1/2 years in Minnesota. I don't have a the antibodies that show myastenia gravis, however I do have a very high thyroid antibody level, vitaliago, hashimotos, and a family history of autoimmune disease.

I currently inject myself with vivaglobin a form of IvIG. It has been very helpful for me. I heard that Mayo is doing some studies with IVIG and neuropathy, however I don't know if they are working with the injectable form. I had a hard time tolerating the once a month high dose IvIG, then went to every two week and finally the injectable form.

I have noticed that my neuropathy symptoms will get worse if I am fighting off an infection. Does yours do the same?

Good Luck.

Rhonda

[bjt22]

You raise interesting questions.

My POTS is due to severe neuropathy. Some of it I think I might have been born with, but its advanced pretty rapidly in the past 10 years. In these past years, I've noticed sensory loss as well. Its not that my hands and feet are numb, its just that sensation has lessened significantly. As an example: a couple of years ago, I sat down here at my computer and noticed a tiny little prickly feeling in my foot. I just casually leaned over to wipe what felt like a crumb off my foot and found that a needle was stuck more than an inch into it. No pain. Pretty weird....I pulled it out thinking "hmmm....this should be hurting". Since then, I've realized that why I don't mind having things such as blood draws, IV's, finger sticks, etc., done is because I'm not feeling them enough to register pain.

Hair patterns: I've never grown hair under my arms. I've lost all the hair on my arms and legs. Well, I still have about 20 hairs, literally, that grow on each leg. I have to shave maybe once every three months to get rid of those few hairs. I've lost significant amounts of hair in, um, other areas, too.

I've never perspired enough to use a deodorant. Something pretty weird has been happening in the past couple of years, though....in a few places on my upper back and lower neck, I will FEEL as if I'm sweating. There won't be any sweat there, but it feels like I think sweating would feel.

As far as I know, I don't have any autoimmune conditions, but I do know that my POTS/autonomic neuropathy is somehow tied into my immune system. I've had some symptoms all of my life. I first had a real increase in symptoms following a bout with bronchitis. A couple of years later, I had the flu while pregnant and this is what really set me off. I improved, but three or so years later, following a simple cold, it all set in again and has only seemed to progress is odd, strange ways. For several years after this, I never so much as caught a cold or virus, despite being exposed on a nearly daily basis. To date, I think I've had two colds since.

Metabolic? I had gestational diabetes. First time I was in my early 20's, five months pregnant and weighing 114 lbs. I had it again in later pregnancies. As I reached my middle thirties, my cholesterol levels went up. My blood sugars are borderline...I always run a point or two under what would get me an "official" diagnosis of diabetes. My family doctor thinks I'm a "controlled" diabetic as for years I've been very afraid of diabetes and have eaten as if I was a diabetic. So, is all of this part of a metabolic syndrome, or is the metabolic syndrome just another manifestation of the autonomic neuropathy/dysfunction/failure? I don't think we will ever know....not in my lifetime, anyway.

[ajw4790]

Hi!

Thanks for the responses and info!

As far as more symptoms with infection... I have not noticed that, but I am not sure I have had an infection etc. "strong" enough to evoke that kind of reaction.

I still have not found much info etc. on these topics. I guess I will be waiting it out until I see a dr. more familar with all of this.

Thanks!!!

[pat57]

ajw,

A brief search tells me that the test you had identifies paraneoplastic autonomic neuropathy.