minimay Posted September 25, 2006 Report Share Posted September 25, 2006 HEY ALL..I WENT TO SEE MY DOC FRIDAY I ASKED HIM IF THERE WERE ANY NEW TREATMENTS AVAILABLE FOR POTS.. HE SAID THAT THERE WAS A TESTS POTS PATIENTS COULD TAKE THAT CHECKED FOR A CERTAIN ANTIGEN IN SOME PEOPLE WITH POTS. IF THE ANTIGEN SHOWS UP IN THE BLOOD TESTS THERE IS A TREATMENT THAT COULD HELP YOU. MY BLOOD WAS SENT TO THE MAYO CLINIC. AND I WILL KNOW SOON. I HAVE TO TAKE ANOTHER TTT. MY LAST ONE WAS 6 YEARS AGO. ANYWAY I DONT KNOW IF ANY OF YOU HEARD ABOUT THIS . I HAVE BEEN SAYING PRAYERS FOR ALL OF US. Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted September 25, 2006 Report Share Posted September 25, 2006 how is it supposed to help? like treatable how? what symptoms would it help with? thanks for the info.dionna Quote Link to comment Share on other sites More sharing options...
minimay Posted September 25, 2006 Author Report Share Posted September 25, 2006 that is all I know for now...I won't know anything till he tells me. Also I only know what he told me..he says that some people with POTS have a certain antigen in the body. and it can have some kind of a treatment..i'm hoping it is good....he said it is new. antigens attack the cells i guess. I read about them but they are complicated....something about the immune system does not understand the antigens so it sends atibodies to fight them. there are different antigens...MS has them. please don't think it's a cure..all I know is what he told me. He said it was some updated info. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 25, 2006 Report Share Posted September 25, 2006 You're probably talking about the antiganglionic receptor antibodies which are found in less than 10% of POTS patients. Yes, if you do have the ganglionic antibodies, there are treatments available that woulnd't be available to "normal" POTS patients. But I'd caution you not to hope too much for the test to be positive. Autoimmune conditions, especially autoimmune autonomic neuropathy can be very difficult to treat effectivley in many patients. I'm not trying to bust anyone's bubble, and I'm not 100% certain that that's the test he ordered (although it is a test that's only done through the mayo clinic). Quote Link to comment Share on other sites More sharing options...
futurehope Posted September 25, 2006 Report Share Posted September 25, 2006 I agree with Dizzy that the test was probably for antibodies to ganglionic receptors. The good news for you is that in order to do this test at Mayo (I had it done and came out negative), there is an entire PANEL of blood work that is tested for autoimmune stuff (paraneoplastic autoantibody panel). So, maybe they'll see something else in the process.For me, they found that my Achr antibodies were elevated. That denotes myasthia gravis, but as yet, I do not display symptoms so I am not being treated.Anything you can find out can end up being useful. Quote Link to comment Share on other sites More sharing options...
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