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Mayo Clinic Podcast


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Neat! Thanks for posting this, Michelle!

One interesting statement from Dr. Fischer was: "POTS was first described in 1993....It was first described in teenagers in 1999." I found that strange because I was actually diagnosed with POTS (as a teenager) in 1996 at Johns Hopkins. Perhaps Mayo Clinic did not yet recognize POTS in teenagers? Was anyone else here diagnosed with POTS as a teenager before 1999?

I like that Dr. Fischer made a point about POTS not being life-threatening. He said that for some patients it might feel life threatening because their heart beat so fast that they feel like it is going to do something bad, but that actually POTS is only life-limiting.

I liked this podcast. It was informative, gave a good overview, explained some of the symptoms that go on, and took POTS seriously. Thanks for sharing!

Rachel

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Michelle,

Thanks for posting this! I have to confess, since my diagnosis, I've been a little bit worried that maybe POTS turns into something horrible later, so I was glad to hear him say "POTS is POTS" for the most part. I hope that he's right, and more and more doctors start learning about this.

Rachel,

I think I started to get it in my mid teens, but it never got that bad because I ended up on Paxil, which seems to dampen the symptoms a lot in my case. I wasn't diagnosed until this year. I'm now 31.

Amy

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Thanx for the podcast. It was informative to learn to take POTS seriously and to touch on the subject.

I was diagnosed with OH in 1997 and we knew that my heart beat WAY toooo fast and somehow over the years started getting called POTS.

I got sick when I was 12, and turned 22 last week and am not healed :lol: Without medication I am no better then what I was 10 years ago, so I don't know if it's just going to go away, but then again you never know.

It is nice to know that it is becoming recognized and that they are doing research to hopefully find a cure no matter what our age may be.

Does anyone know anything about the antibody thing Dr. Fischer briefly mentioned at the end. If you do PLEASE PLEASE explain it and any possible treatment? I have had a high ANA since I got sick, but my dr doesn't know how that fits into the mix.

Madeline

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Madeline,

Some POTS patients have antibodies to either M2 muscarinic receptors or acetylcholine. Your local doctors office can draw blood for the tests, but I think they're usually sent to Mayo for the actual testing.

Acetycholine is a neurotransmitter that stimulates muscarinic receptors. The M2 muscarinic receptors are in the smooth muscle tissue throughout the body (like the heart, veins, intestines, etc) and are stimulated/receive messages from acetylcholine. Basically, both acetylcholine and muscarinic receptors work in bringing messages from the brain to the body. So if there are antibodies that inhibit a step in the transmission, then signals get messed up.

11 years ago at Johns Hopkins the researchers found an antibody in my blood to the M2 muscarinic receptors. My specialist there said that that was what was causing my POTS. After a while my POTS got better for a few years. I wasn't normal, but was close to it. 3 years ago, though, my POTS became disabling. I was recently re-tested for the M2 antibody, and it is now gone. :blink: Huh?! So I guess I'm dealing with a different cause in my POTS now. I don't know - my docs can't figure me out!

If you want to get tested for these antibodies you can just ask your doctor. But when you go to the lab, make sure they do the right code!!! Some labs don't often do these blood draws, so it can take them a while to find the right code in their book. I once had a lab do the wrong code because they found something that looked "close" to right. But it wasn't exactly right, so I had to have the blood re-drawn at my next visit in order to have the proper test.

I have no idea if that helped to answer the question, or just confuse the issure more! :rolleyes: Hope my ramblings helped a bit.

Rachel

Edited by Rachel
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Madeline,

We never actually did any treatment for the specific antibody problem that was found back in 1996. Plasmaphoresis was suggested as my last option by my neruo at Johns Hopkins, but it wasn't something I was interested in trying at that time. I went off of all meds because nothing was helping. But I did continue with water, gatorade, and lots of fruits and vegetables (which have always helped me for some reason). After another year and a half I actually started getting better for unknown reasons. Come the summer of 1998 I was doing pretty well. I still had to drink a ton of water, and I was definitely more tired than all of my friends, but I was able to live a fairly normal life. So we never did any treatment at that time for the antibody to M2 receptors.

In 2004 when my health first became severely disabling we did try some treatment specifically for the antibody problem. I went on Mestinon for a couple of weeks. My pcp prescribed the Mestinon after consulting with Mayo. Mestinon helps to creat more/prevent the breakdown of acetylcholine. So the doctors were hoping that if I had more acetylcholine in my body that the few M2 receptors I did have would be more highly stimulated, and thus function more effectively. But it didn't work. Oh well! Later I found out that the antibody is no longer in my blood anyway.

Rachel

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Thanks, Michelle. I loved this and emailed it around to some people. He describes POTS in a very user-friendly way and also does a good job of explaining what it's like to live with POTS and some of the things that help. It seems like we are slowly starting to see more publicity these days. Hope it continues!

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Thanks for the link.

The podcast was really well done.

I have sent it to people close to me who don't seem to really GET what is going on in my life. Hopefully this will help explain things in a way that is understandable and lend some credibility since it is from Mayo!

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thanks for sharing this michelle....i certainly see any awareness spread about dysautonomia as a step in the right direction!

:rolleyes: melissa

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