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cardiactec
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Do you have mitral valve prolapse diagnosed by echo?  

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i am very curious lately with the connection between mitral valve prolapse and autonomic instability, mainly POTS. a typical "profile" that fits the bill for most people with pots seems to also fit the bill for MVP patients as well, well some of the profile anyway. i asked a neuro what the profile typically is, if any, for patients with pots, and he said they are usually lean, their BMI is on the low side (underweight). he didnt say anything about height (being tall) or long tapering limbs/fingers/etc but that is supposedly the classic profile for MVPers so i'm really wondering if this could be the same profile for pots patients as well.....wondering if there is some grand connection....

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My sister fits the classification of tall/lean and she has mitral valve regurgitation but no POTS at all (thank goodness).

I do NOT have MVP or regurgitation. I'm tall/lean and have POTS.

Maybe my body type has a predisposition to POTS. I know I have a predisposition to osteoporosis which has already begun in me.

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I have trace physiologic regurgitation. My body type is ... short! and sturdy... I could have been a gymnast as a kid, but thank goodness we were too poor b/c I'm sure my loosey goosey joints would have absolutely come undone.

Nina

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I don't have MVP, but I also have mild regurgitation, specifically tricuspid valve. I am also short and sturdy, as Nina put it! I was a gymnas until age 15, and that's probably why the joints are so bad now. No one in my immediate family has had heart issues to warrant an echo, but none of them has POTS. I would be interested to know, too, if any of them has any kind of regurgitation with the EDS. You might like the book

the MVP syndrome/dysautonomia survival guide by Durante, Durante, and Furiasse.

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Guest sonotech

Cardiactec,

Isn't it true that there is a fairly large number of people that may have MVP but it doesn't always show up on echocardiograms? I always have wondered if more people with POTS have MVP but just don't know it.

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hey sonotec,

it can be seen as a positive test result if you are dehydrated.....the valve can then prolapse.......some people say this is a false positive, others say since you are prone to the valve prolapsing even with dehydration, that you DO have it. other false positives can come from transducer/imaging positiong or patient positioning, but once again, some people say that positioning cannot cause a "true" prolapse, but more of a false positive........there's a lot of conflict in the med field with the diagnosis of MVP. generally MVP is usually assessed better by having a doc listen with a stethescope, have you bear down (valsalva) WHILE lying down. even so, some people say that even if a click is heard, the patient could still be dehydrated and causing a "false positive". i was diagnosed with it both by echo imaging (several echos, not just one so i know i have it) and by a mayo clinic cardiologist who listened to my heart, had me valsalva and said "yep you have MVP"...........

i guess it is different facility to facility. some will diagnose MVP even if it's not seen on echo. i think it needs to be seen on echo for a diagnosis. i'm not sure how one COULD be diagnosed with the mitral valve prolapse SYNDROME but show no prolapsing valve. doesnt make much sense. it's like diagnosing someone with POTS and not seeing a high heart rate increase when they stand....ya know what i mean?

i have thought forever that i have MVP moreso than pots. i have the high heart rate with standing, but am less symptomatic than most people with pots.........either i have adjusted so well to pots that it hardly phases me (well some of the time, not all the time), or it is the prolapsing valve causing the tachycardia/mild symptoms and i dont really have pots! lol. who knows. i have both for now, but i think eventually someone is going to conclude and draw a line between patients with both pots and MVP from those who dont have pots.....i think there is something that distinguishes the MVPer's and POTsy's from just the potsy's.....i think there is a totally separate etiology for those who have both mvp and pots. that is pretty much how pots right now works anyway, everyone has their own etiology, whether you have mvp and pots or just pots....just wondering if those with both pots and MVP have a specific type of etiology........

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I have been told that I do not have MVP. I fit the profile you describe as far as low BMI--I am also tall (nearly 5'11") with long fingers and limbs. I have 3 sisters. One has POTS and she is also tall (5'8"), but does not have a low BMI.

We seem to have a wide variety of body types among us on this forum however. I have found the POTS physique profile puzzling since so many of us do not seem to fit it.

Katherine

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Wow, this forum is amazing! That is exactly what I have been wondering lately. Are my symptoms from POTS or is it the MVP? I was diagnosed with MVP with mild regurgitation on an echo by a cardio. I asked him directly, "Could the MVP be causing the dizziness, fainting,etc. ?" He said no. That is a separate problem.

But, since being on the meds Florinef and Toprol XL, I feel more like its the heart more than POTS. I really don't feel like passing out anymore, mainly short of breath if I lift something or climb stairs. My chest tightens up at night(right about this time 8-9pm) when it time for me to take my meds. Then it proceeds to a minor headache, then nausea, ... Thought about calling the cardioand asking if I can up the Toprol Xl 25mg to 50.

I figure he'll just say its not necessary. Go figure... I'm short 5'4" and thin(according to the neuro I need to gain weight) and my neuro says POTS is common in thin woman. I just figured I got the MVP from my dad.

Maybe someday, we'll figure it out! At least, before the doctors do! ;; Karen

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you should bump up your toprol if you think you need it. of course go through your cardio to do so. i had to bump up my beta about 8 times before i was at the "right dose". i started off with low low doses, now i'm up to 200 mg's a day and it's working wonders on my HR. i'm not as symptomatic.

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  • 2 weeks later...

I have MVP and POTS...my MVP has showen up on about 6 of my 8 echos the past year. It actually was so bad twice that they started freaking out when they saw it!! But of course my cardiologist didn't think my MVP was a big deal...so no drugs for that!!! I fit the profile am 5'9 an ex ballet dancer and professional ballroom/latin dancer I have very long limbs and am super slender.

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