When I was at Mayo back in Nov. Dr.Goodman say the are now considering pots to be an autoimmune disease no longer a syndrome. He said the immune system attacks the autonomic nervous system. Has anyone else heard this?

My doc did say the immmune system could attack the autonomic nervous system as one of the probably causes for POTS in my case. He did not say officially about whether they consider it an autoimmune disease or not, but it makes sense to me.

My neurologist recently said this to me as well. I had never before heard of Dysautonomia being autoimmune, and my neuro was the first to bring up that possibility. It would make sense in my case definitely, since I also have Celiac Disease which is autoimmune, and Colitis which is heavily thought of as autoimmune too. If you have one autoimmune disorder, you have a much higher chance than average of developing another.


Gillian

Just judging from our own family history and some of the family history of others I have chatted with, I definitely feel that there must be a strong autoimmune link in at least some, if not many, of the cases of dysautonomia. I have also seen reference to this possibility in articles I've read.

I often wish there was a database for gathering case histories and family history of dysautonomia patients. I believe there is a lot that could potentially be learned from that information.

I think there is something to this and it provides a good reason for why vaccinations can cause D/A. They are supposed to build out immunity for the disease but our body gets it wrong and turns on us instead. That's how we think I got mine...no more flu shots for me

There are many different causes for POTS. One of these is autoimmune. POTS may also be caused by nutritional deficiencies, heavy metal or toxic poisoning, AIDS, cancer, or metabolic disorders in some cases.

When I saw the Harvard Med School neurologist at Beth Israel Deaconess last June I asked him if he thought my POTS was primary or secondary in nature(i.e. idiopathic or caused by another body system dysfunction such as neoplasm). He told me there was no such thing as secondary POTS. I was astonished to hear this when all the literature states that there can be an underlying cause of autonomic dysfunctions including POTS. I mentioned some of Dr Grubb's papers and he dismissivly said that "Dr Grubb doesn't know much about POTS". That's when I was very sure that my travel of hundreds of miles at great expense to see this so-called expert in his field was one very large waste of time and money.
I'm think that many POTS and ANS dysfunction sufferers can point to an autoimmune origin of their dysautonomia. I have a friend with Lupus who has many dys symptoms and it stands to reason that if our immune system is attacking our body the ANS is just another target with a predictible outcome. Diabetes, Addison's disease, MS and numerous other disorders that have associated dys are all considered autoimmune in nature. Just because they haven't found that magic test to show that pure POTS is also of that ilk doesn't mean it isn't.
But also it's really important to rule out all other possible causes of our POTS such as cancer and, in my case, a possible vascular abnormality. While it would be great to have us finally given the attention that a disease merits rather than being dumped into the trashbin of yet another syndrome, my hope is that this doesn't narrow the focus of the treating physician too much so as to rule out other non-immune causes.

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I think there's a paper out there somewhere..I'll try to find it. Anyway, what I seem to recall is that some cases of dysautonomia can be autoimmune related. I don't know if all are...but it's great to think they are making advances in this area of research!

I was told mine could have been a hyperimmune response to vaccinations...hard to say.

They've already identified one of the autoantibodies that contribute to or cause POTS. My neurologist broght it up to me. It's called...

Autoantibodies to Ganglionic Acetylcholine Receptors

You can read more on it here...

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

when I was in hosptial last september under the care of my pots doc my blood tests indicated that I had some sort of autoimune problem but they never could find out what. I just left hospital feeling very confused about this. It seems at this time there are no answers for me in that area.

Thanks for that link Sunflower.

I was told by one of my PCPs that he's pretty sure that my Dysaut is caused by a combination of autoimmune and metabolic issues. I always figured it might be before that, even, because of the strong link with so many autoimmune diseases. It's very interesting that more people are coming to this conclusion, though.

I am another who has wondered about a possible autoimmune link to dysautonomia. My internist has been saying for some time (while ruling out other possible causes) that she thinks we will find autoimmunity to be at the root of my symptoms. We already know my thyroid issues are autoimmune, and as someone else pointed out, there is a strong likelihood that, already having one diagnosed autoimmune disorder, I probably will have others.

I wish I could remember where I saw this, but some researcher even felt that there is one disorder causing all autoimmune conditions, and this would help explain why people tend to have multiple autoimmune diagnoses. There is much research yet to be done to understand autoimmunity.