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Living with POTS in Alaska


Rachel
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Hi,

I'm new to DINET. I've actually had POTS for years, but never even knew that there were support groups or forums out there for health problems like mine! So I have been very grateful for this website! When I was diagnosed little was known about POTS. Eventually I just quit going to the doctor because I didn't want to be a guinea pig anymore. I was tired of trips to the doctor being my social life. My health got somewhat better for a year or two, but has been steadily getting worse for about 5 years now. I am no longer able to work, I have to rest or sleep most of the day, I can't stand for more than about 2 minutes without great difficulty, and somedays I can't even watch a movie because keeping my eyes open is too exausting. I am trying Mestinon now, but I don't hold too much hope for it because treatment has never worked for me before.

I've been doing research since late fall of 04 just to see if any more had been discovered since I was going to the doctor in highschool. So I have been very pleased to find so much new information! Problem is, I've been living in Alaska for over 5 years now and there aren't any POTS specialists up here. So I have to do my own research. I'm still searching for some answers, so I thought I'd try to find some on here.

When I was at Johns Hopkins they found a substance in my blood that antagonizes M2 muscarinic receptors. They believe that is what causes my POTS. Has anyone else had tests come back with this result? Are there any treatments that worked? Plasma Phoresis was an option given to me a few years back, but I was told that there is some risk involved, it may or may not work, and it is expensive, so I never tried it. Has anyone else tried this?

I'd be grateful for any help you can offer. Thanks so much!

Rachel

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I had never heard of the type of problem you've been tested for until you posted...so, of course, I had to google it and read a few articles. It looks like the M2 muscarinic receptors have an impact on parasympathetic functions, acetycholine release (a neurotransmitter), and lung function. Also, antagonists for these receptors can damage/inflame the nerves.

I'm not aware of anyone else on this forum having mentioned this test in the past...and I don't recall seeing anyone from the NDRF forum reporting having had that test.

Did you ever try the plasma phoresis treatment? If there plasma phoresis were used, did the doctors think it would it alleviate your symptoms? It looks like the risks are bacterial infection and allergic reaction or anaphylaxis.

Here's info on the procedure:

http://www.chclibrary.org/micromed/00060980.html

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Thanks for the replys. No, I never did have the plasmapheresis (I never know how to spell that. It is spelled differently depending on where you see it written). It didn't seem worth trying, plus it is so expensive and it is difficult to get an insurance company to cover it.

The purpose of the plasmapheresis would be to clean out the substance/antibody in my blood that is keeping the M2 muscarinic acetylcholine receptors from working as they should. The doctor at Johns Hopkins said that he knew that the substance found in my blood was blocking the signals from my brain to my body and therefore causing my POTS. He said that the plasmapheresis would be a treatment I could try, but he didn't know for sure if it would work or not. It seems to me that it would work for a time, but that my body would just continue to create the antibody for M2.

I was hoping I'd be able to find someone who had gone through the procedure so I could hear how it helped POTS specifically. At this point I'm not willing to try the procedure. Risks would include mild or fatal allergic reactions or bacterial infections. If my health continues to get worse I guess might have to try it in the future. But not yet.

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I heard of someone who had plasma infusion and she said he helps her a lot. I don't remember where I read about it so I can't tell you more about that. I don't even know if it's the same kind of treatment. If I remember more I will tell you.

Ernie

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The point of the plasma phoresis (also spelled pheresis) is to remove the antibodies that are attacking the receptor sites... my guess would be this procedure would have only been offered to those POTS patients who already have a verified diagnosis of an autoimmune form of POTS; we have a few on this board, but I don't recall any ever mentioning the procedure here or on other forums I've belonged to.

You might want to see if anyone on an autoimmune or rheumetological forum has had the procedure; I think that population would increase your odds of finding someone who'd had it done at least once--or even knows what it is.

Nina

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