I Know I Did A Poll On This In The Past But ...

[cardiactec]

Just wondering. Did this poll before, but I know there are newbies on here so i'm bringing the question back.

I have had about 6 ECHO's since 2001 and all of them have shown posterior mitral valve prolapse, but a most recent echo (and more detailed via 3D imaging) revealed bileaflet mitral valve prolapse. thankfully, i don't have much regurg with it.

I know some doctor's think that this has nothing to do with dysautonomia (in regard a "finding" to suggest dysautonomia) while others think there is a higher prevalence of MVP to people who have other symptoms of ANS dysfunction. There is a link of MVP to connective tissue problems (ehlers danlos, marfans) which makes sense as collagenous fibers are faulty, which make up the heart valve structure BUT that said, being a cardiac tech, I have done cardiac echos on patients who do not have any type of connective tissue problem (that they know of) and who do not have any symptoms of ANS dysfunction. There have been a few though who have either connective tissue disease and/or ANS dysfunction symptoms along with a true diagnosis of MVP.

So, do you have MVP?

[issie]

I was told that I had significant mitral valve prolapse -- While on a beta blocker. Now, that I'm off the beta blocker, not near as severe. Wonder if there is a connection. I also have Ehlers Danlos and POTS (of course). I think the beta blockers made everything worse for me.

[Birdlady]

I was told when I was 17 that MVP was the cause for all of my issues (rapid heart rate, lightheadedness, fatigue etc). Fast forward 8 years and I don't even have it now! I really think MVP is blamed for A LOT symptoms it does not cause.

[DizzyMe]

I have EDS/POTS and have had mitral valve prolapse(without regurgitation) diagnosed by echo.

I have read that some people have MVP without much symptom but others have MVPS(mitral valve prolapse syndrome)which includes dysautonomia.

As far as I know MVPS is now grouped under the POTS umbrella,but is it the MVP(heart) or the EDS(floppy veins) causing POTS?

[MightyMouse]

My echo from 5 years ago was trace MVP, but the one I had a few months ago (Feb) showed advancement to mild. We're keeping an eye on it--thank goodness I have a great EP cardio--he's not a POTS specialist but has always been willing to learn and work with me.

Nina

[flop]

My Echo showed a trace of TR and trivial MR but no MVP.

Flop

[ramakentesh]

MVP syndrome is a misnomer - its basically POTS before they realised there was tachycardia

[issie]

With me when they said I had MVP I had pretty bad regurgitation and the mitral valve didn't close properly. I think the betas relaxed it too much and caused it to be worse. I still have a small amount of a problem but nothing like it was on betas. Now, they say I have some sort of calcification at my mitral valve area and maybe that's helped it to stay closed better. They didn't seem too concerned with it this last time. But, I still can't lie on my left side to sleep - it makes it worse.

Issie

[bellgirl]

I was diagnosed with MVP with an echocardiogram at the same time as I found out I had ANS Dysfunction. From what I have been told, not everyone with Mitral Valve Prolapse has dysautonomia, but many with dysautonomia have MVP. I have read it is a marker of dysautonomia. This is still unclear to me, though, because I believe I have Marfans, (Just by markers, symptoms), which would mean my MVP was congenital, (I have a brother with it, too, although he does not have dysautonomia),so why did it take so long to diagnose this. I have had irregular heart beats since I was about 47. I felt them in my chest every time. I have a B/P monitor with an irregular heart rate detector. Beta blockers have helped the palpatations. I had a holter monitor after being put on BB's, which seems backwards to me; it was only a 24 hour one, and since I was reckless in my sleep, (also have sleep apnea), I pulled the wires out in the middle of the night, so it was worthless. Sleeping on my left side, and my back are my only comfortable positions. My right side goes numb from the virus I had that I believe triggered my dysautonomia.

[HopeSprings]

Is mild mitral regurgitation the same thing? I have that.

[Birdlady]

I had another echo done recently since this poll was taken and I still do not have MVP. Everything and I do mean everything was blamed on MVP for many years. It was the worst diagnosed I was ever given because no docs ever listened to me. I struggled for nearly 7 years because of that diagnosis. Any time I'd even mention my heart rate or dizziness, my docs would immediately tell me it was MVP.

I still have mild regurgitation on my mitral valve and quoting from the report "Mitral valve leaflets appear mildy prolific and redundant." But there is no MVP. I'm thinking there never was, but the person who did the original report wasn't very good at reading it.

[bellgirl]

I'm not an expert, but I could see the prolapse when they did mine! I also knew what to look for, being a nurse. Yes, regurgitation or backwashing of the blood from the left ventricle to the left atria is part of MVP. They did mine lying down on my back, my side and sitting up. It was interesting . Where I had it done, it is there specialty. Actually about 40% of us with dysautonomia have this...