Autoimmune related POTS

[Meliss446]

I was doing some research today, and found some interesting things relating to autoimmune POTS and anti-ganglionic antibodies. I read that an autoimmune reaction may be the cause of some peoples POTS. I was wondering if anyone has tested positive for anti-ganglionic antibodies or have an autoimmune disease that is causing the POTS. I also read that this is sometimes treated with a plasma exchange or IVIG. If anybody knows that they have this, or knows anything about it, I would really appreciate the information. Specifically, is there a more specific presentations of symptoms that would indicate an autoimmune reaction? It seems like the symptoms of POTS varies by the physiological cause behind it. Is it difficult to get tested for this, or is it worth it? My POTS was post-viral so I am pretty interested in this.

[Poohbear]

I'm not positive about this but I think the Mayo clinic is the only past that does the bloodwork test that you are referring to. You may want to have your Dr. call or email them to inquire. I believe you can have a local lab draw the blood (you don't necessarily have to go to Mayo to do it) and ship it to Mayo. You do want to make sure the lab follows proper instruction so as not to contaminate or in any other way mess up the lab results.

[wareagle]

Just wanted to chime in a let you know that there have been several discussions about the anit-body test and plasma exchange so you might want to do a search..or maybe someone can pull the discussions for you..I would but don't know how .

I'm also interested in having the tesing done and I know that several others have been tested so hopefully they can give you some more info. OH..if you look at DINET's main section under possible causes the anti-body test is listed with the ph. number for Mayo!

[futurehope]

Meliss 446,

What I did is I discussed with my POTS doctor my interest in finding causes for my POTS. My reasoning was that if the cause is treatable, then maybe I can be given the right treatment and improve.

Because of my constant search for answers, my doctor did a paraneoplastic antibody panel (done at Mayo), which tests for certains diseases (porphorea, B-12 deficiency, and others). In the course of doing that, he also called for the ganglionic receptor antibody test.

My paraneoplastic panel was negative, but I came back positive on the AchR Antibody panel.(The ganglionic receptor test had not been done.) This shows I have Myasthenia Gravis. I do not display symptoms MG yet but I'm not sure. That is currently being pursued by me.

Anyhow if you want to read more about my journey for anwers, the thread is:

http://dinet.ipbhost.com/index.php?showtopic=4580&hl=hopkins

My advice is keep plugging away to find answers. It's a slow process for sure. And sometimes I feel so very self-absorbed - You know - me, me, me and my problems. But I do think it is necessary that I keep plugging away. I've got important things to do in this life like see the birth of my first grandchild in late June. SO I want all the answers I can get and all the help I can get.

Also, it's rather interesting in my 2 1/2 years on this forum the VARIETY of ailments people have mentioned that may have caused their POTS. Same problems, different reasons.

My best wishes to you on your journey for answers!

[Sunfish]

hi melissa -

here are the previous discussions re: the antibody:

http://dinet.ipbhost.com/index.php?showtopic=4078&hl=plasma

http://dinet.ipbhost.com/index.php?showtopic=4332&hl=plasma

http://dinet.ipbhost.com/index.php?showtopic=3735&hl=plasma

http://dinet.ipbhost.com/index.php?showtopic=3778&hl=plasma

the testing itself is simply a blood test; the tricky part is that it's only done one or two places (mayo and i think someone had it sent somewhere in texas?) so getting it sent and processed correctly can sometimes be a bit tough. several of us have had it done and processed incorrectly the first go around; for me the second try (though also with a diff doc) was the charm.

my understanding is that the "presentation" is believed to be more the neuropathic variety of things rather than a hyperadergenic version. for me i haven't had positive antibodies but all my docs (including several of the autonomic gurus) are pretty confident that i have some sort of autoimmune process going on due to my progression of things over the years and particularly as multiple body systems have been affected more notably in the past year. my symptoms actually have my docs in disagreement about whether i have POTS or PAF but they agree on the autoimmune issue. i also have a few other autoimmune diagnoses which would support the argument as often people have more than one.

they think that even though i don't have the one particular positive antibody that there are likely other antibodies that no one has isolated yet. thus we're seriously considering proceeding "as if" and embarking on IVIG treatment to see what happens. (IVIG is less invasive than plasma exchange & thus also less expensive & easier to get insurance to go for since we're thinking a bit outside the box.) i'm more than ready to give it a go and we're currently trying to wrack up a bit more extraneous "evidence" of autoimmune stuff going on in my body to help my doc get it approved.

hope this helps,

melissa

[Guest Belinda]

Melissa I was tested for this and should know the results in the next few weeks as it has been like two months since the testing was done.

I will post once I know the results.

I had a bad viral infection and I know that around that time the orthostatic variances started showing up.

I wlll post on this soon!!!

Belinda