Positive Ttt, Possible Autoimmune Disorder??

[Jacquie802]

Hi guys,

I got the results of my latest tilt table test today and it was positive. My neuro is going to start me on Mestinon because they found elevated numbers in some blood test, it was something to do with ganglions??? Does anyone know what that's about. My doc said something about it being autoimmune causing my POTS.

Im really confused, if anyone has any experience with Mestinon or autoimmune POTS please let me know. I am scared and confused right now.

Jacquie

[MightyMouse]

I believe you're talking about the Antibodies to the Ganglionic Acetylcholine Receptor, which Mayo has published articles about--the following is the abstract from:

Neuronal Ganglionic Acetylcholine Receptor Autoimmunity by STEVEN VERNINO AND VANDA A. LENNON

Also see the following articles

http://www.ncbi.nlm.nih.gov/pubmed/1099586...Pubmed_RVDocSum

and

http://www.ncbi.nlm.nih.gov/pubmed/1278342...Pubmed_RVDocSum

if you need to get full text articles, please message me privately.

[ana_22]

hi

Do you know what type of blood test this is? my neuro ran a whole lot of blood tests and i was just wondering whether this was covered.

thanks

[pat57]

look for the recent thread here, "Mestinon"

[MightyMouse]

Ana, for quite some time, Mayo was the only place that offered the test--but it may be more publicly available now. You'd have to ask your doctor if they tested your blood for antibodies to ganglion.

Nina

[Jacquie802]

Hi guys,

Thank you all for your replies. I'm not sure the name of the test I got done to check for the antibodies, but I had the test done at Beth Israel Deaconness in Boston, there are alot of teaching hospitals here so maybe that is why they did the test, for further information.

I am curious though, if my POTS is autoimmune does that mean it is going to get worse?? Also, what does the Mestinon do to help?? Thanks for the replies in advance!

[pat57]

We had a good discussion about it in the other thread titled Mestinon. It will answer your question, "what does the Mestinon do to help?"

[ajw4790]

Hi,

I believe that was the test I had too. It was sent to Mayo from my hospital to be tested. I think Mayo may still be the only one who does it. Your hospital likely would send it out as well.

Here is a link on my current post on autoimmune POTS. It also discusses what I think is the same test.

ACh Receptor (muscle) Binding AB test

http://dinet.ipbhost.com/index.php?showtopic=10679

For more info. try the search engine to look at autoimmune POTS and Mestinon.

I think this test can indicate a variety of autoimmune conditions and not a specific one. Some autoimmune conditions can be treated and with that treatment your symptoms could decrease, so it is not necessarily mean it will get worse.

Hope that helps!