Mitral Valve Prolapse, exercise and heartrate

[Carrie]

Hi, I just joined this board and after reviewing the FAQ's, I didn't see an answer to my questions, so I thought I'd ask here.

I'm a 34 year old woman with mitral valve prolapse. I have no idea of the degree of severity or anything else of that nature. It was diagnosed by echocardiogram when I was in jr. high school. (In 7th grade I was one of the best runners in my gym class, but the next year I could not even do the minimum number of laps in the time allotted and I had a very fast resting heartrate, so off to the doc we went.) Anyway, they told me that it was no big deal and that it shouldn't affect me, other than I could probably never compete in any sports that required aerobic activity such as running or swimming.

I joined the YMCA a few months ago and have been going to a dance aerobics class on a regular basis and I'm getting frustrated at my heartrate. It seems impossible to keep anywhere near the "target heartrate". I'm always well above. Even when I get on the elliptical machine and I'm going slowly (3-3.5mph) the machine has to tell me to slow down as my heartrate gets up to 160 bpm. Now, I've got women in this class with me that are at least 20 years older than me and heavier and they aren't even breathing hard or breaking a sweat. (I am a high-normal weight for my height, by the way) I huff and puff and can't carry on a conversation and when we stop to check our pulse, mine is racing and above what it's "supposed" to be. At least I've stopped turning an alarming shade of red all over my face and body...

What I want to know is, if I keep at this, do you think I will eventually be able to do this class without feeling like I need an oxygen bottle or that my heart's going to pop out of my chest any minute? I can't ride a bicycle up even the mildest incline without being completely winded and needing to stop, I have to stop for breathers when hiking up steep hills, even climbing a flight of stairs causes my heart to speed up noticeably, etc, etc.

Oh, and the other thing is that everything I read about exercising to burn fat wants you to keep your heart rate kind of low so that you burn fat and not carbohydrates. Obviously that is a huge challenge for me. Is that necessary do you think? I am torn between trying to exercise more gently to try to stay in the "fatburning range" OR exercising vigorously and hope that my heart will become more conditioned and will handle the same exercise more and more easily.

Thanks for reading and I welcome any advice you might have to offer. I hope I don't come off as whiney or complaining...it's just that doctor's seem to shrug off my concerns or questions and I really want to improve my cardiovascular fitness to as normal as possible (or better, even) and they can't/won't tell me if that's possible or how I should go about it or what's too much too soon. I do count myself very lucky that I don't require surgery like so many of you folks do/did.

[geebee]

Carrie,

I guess my first question is, "are you being followed by a cardiologist"? A lot can change from junior high school to 34 years old. If you do have a cardio, what is his/her response to your symptoms. If you are not seeing a cardio, I think that should be your next step. Sometimes prolapse can be very serious and we do have a couple of members who have required surgery.

Being generally out of shape can cause similar symptoms and they will usually improve with time. However, given your history, I don't think you should pursue this without more information from a cardiologist.

[Karlynn]

Welcome Carrie,
My first question is the same as GeeBee's - got a cardio and are you doing regular check-ups with him/her? If not, then do so before you do any more working out.

If you are being followed by a cardio, are you having regular echo tests? If not, now would be the time to get one. If you have a recent one, post the measurements here - we have some very knowledgable members that can give you their opinion on how severe or mild your particular situation is. If you have a doctor that tells you "Oh, lots of people have MVP. There's nothing to worry about." Or "You're to young to have problems related to MVP." - get another doctor. Yes, lots of people do have MVP - but a doctor with that attitude will most likely not be willing to believe your symptoms are valve related. I had a doctor try to put me on Valium because he thought I was blowing my symptoms all out of proportion.

People with MVP do tend to have their heart rates jump up really quickly, so your description of how fast yours goes up doesn't surprise me. The big question is whether or not it's because your valve has become worse recently, and this you definitely need to get checked out.

[Georgia]

I was diagnosed with mvp at age 29 because of arrythmias and tachycardia. I had to take digoxin and beta blockers to get my heart to settle down. The regurgitation from the mvp can cause your heart to become sensitive and causes the rapid and erratic heartbeats.

Ditto for going to the cardiologist. It's a necessity in your case. I had a pcp who didn't follow up on my cardiac problem and I ended up in trouble.

I suspect that if you get on some medication you'll have better luck with keeping your heartrate where you want it.

[Carrie]

No, I haven't been seen by a cardiologist. I went to the doctor last year because my heart was keeping me awake (everytime I would lie down, it felt like it was beating more forcefully, even to the point where the book on my chest was moving up and down) and it was hard to fall asleep because of the pounding. They did an EKG which was normal and sent me home. I also sometimes have what feels like an "extra" beat that's really hard. I visualize it as a (it's ok to laugh at this, it's goofy!) little donkey in there that suddenly kicked me hard in the chest, and when that happens, for a second it feels like I can't breathe. Then it's fine.

I guess I'll make an appointment with my M.D. and ask for a referral. You are right, a lot can change in over 20 years. The thing that bothers me is that if it were just being out of shape, you'd think I'd see some improvement in 3 months of steady exercise, and I'm not that out of shape. I'm an active person and a size 8, I eat relatively healthfully and I'm in otherwise good health. Thanks for the input, and the suggestion to see a cardiologist. They really do seem to shrug it off and it made me feel like I was making a big deal out of nothing. I'll let you all know what happens and will keep reading the board in the meantime so I can learn some more. :)

**Edit** I also wanted to say thanks for making me welcome here among you and I appreciate your advice.

[geebee]

Carrie,

Valve problems, per se, do not show up on an EKG because they are not electrical. They can sometimes trigger electrical problems but the echo is the standard for measuring valve issues.

Insist on a referral (if your insurance requires one) and get this checked. Let us know what happens. I am sure you will end up with more questions.

Based on what you said about your lifestyle, I would agree that you should not still be having problems from "being out of shape". There is definitely something else going on.

Good luck.

[MelissaM]

Carrie,

Exercise intolerance, heartrate changes and palpitations (the donkey kicking you in the chest :) ) can be a sign that something has changed. For me, these were some of the biggest signs. At the time, I felt they were pretty subtle changes, but in retrospect, I can see my heart was trying to tell me something.

Time to get to a cardiologist!

Melissa

[maka]

Carrie
I can only echo what has already been said....please go to a cardiologist and I will add....make it soon. I also had a mitral valve prolapse diagnosed when I was very young and was told for many, many years not to worry. I had my regular check ups and one day a new cardiologist told me that I should have it operated before it got worse. It had developed severe regurgitation. Valve was repaired in August.
I’m definitely not an expert but your symptoms sound to me more heart related than being out of shape. If I were you I would stop the exercises until I see a good cardiologist

[Karlynn]

I would be a bit careful of a doctor that just does an EKG, knowing you have MVP, when you report the symptoms you did. I only say this because it seems that many doctors are quick to dismiss younger valve patients strictly due to age. They just can't wrap their minds around someone young having issues, if it's not something they specialize in. They assume only older people have heart problems. When I was 27 I had a doctor try to prescribe Valium to me because he thought I was conjuring up my symptoms because I was young.

Given your current symptoms when working out, I would advise that you not work out until you see a cardiologist and get an echo done. Don't put this off.

I know that this all probably frightens you, but you are better off informed about what your current state is.

Keep us posted, and let us know if we can answer any more questions.

[FranR]

Hi Carrie:

[carista]

Hi Carrie from a fellow Minnesotan!

I don't have problems with my mitral valve, so can't help too much, but I wanted to mention that before I had surgery I was told to keep my heart rate under a certain point and doing the elliptical I also felt like I was barely getting a workout before my heart rate would be up there. I don't think it has anything to do with you being out of shape and I also don't think that working out more or harder is going to help. I would definately see a cardiologist like everyone else has said. I would do it as soon as possible just because I think all the sympoms you're getting are for a reason.

Just so you know also, working out slow is fine and just as good for burning body fat, it just isn't as beneficial cardio wise. I would play it safe and not work out until you see someone. (If you do, taking it slow is just fine)

Good luck and welcome!

Carista

[FranR]

Hi Carrie: I'm a fairly recent member to this site but wanted to respond to you after reading about your symptoms/concerns. I had my mitral valve repaired almost 4 years ago (Feb.). After reading many postings on this board about various members' problems, I feel complelled to put in my two cents about my experience and give some advice. So here goes...like you I had a "weird heartbeat" especially when sitting or laying down. I brought it my doctor's attention and likened it to a 'backwards heartbeat'. I was diagnosed with MV prolapse and was followed for about two years with EKG's. I was told that this condition was very common in woman and nothing to worry about. After a while though I asked to see a cardiologist just to make sure everything was okay. The cardio seconded the diagnosis of MV prolapse and said he would monitor it, adding that I may "eventually need surgery." Surgery seemed so 'out there' for me as I never even had the flu, so I immediately went for a second opinion. It was the best thing I ever did. We are a former military family and my first cardiologist was a civilian (or regular) doctor. I decided to go to a military doc since I thought the first cardio just wanted my money by saying he needed to monitor me. But to make a long story short, the military doc told me that not only would I eventually need surgery but that I should have it as soon as possible before I actually needed it. His reasoning was that heart damage would eventually occur (in the way of enlargement) and I should repair the MV before any damage was done. So basically I had "elective" heart surgery...that is a term that sounds crazy, doesn't it. But here's my two cents - after being a member of this board for the past month and reading many, many posts about people's experiences/problems/symptoms, etc. I would venture to say that I was given expert advice about having surgery done before it was necessary. I had no damage/enlargement therefore my repair made my heart better than before. It was amazing to me how much better I felt after my surgery. I really didn't think I had any symptoms until after my repair and I was actually able to walk up a flight of stairs without breathing hard. I just always thought I was out of shape even though I'm thin. So my point is this...although MVP is not uncommon and many doctors will tell you it's nothing to worry about until you show severe symptoms or damage, don't wait to get it repaired. Obviously nobody wants to have the most major of surgeries, but if you can fix a problem before it becomes really serious my opinion is to do it. I realize that everyone has their own experience and views but I wanted to share mine with you and the rest of the members. Good luck to you and keep reading the posts. I know you'll find some great information here.
Fondly, Fran

[FranR]

Hi Carrie: I'm a fairly recent member to this site but wanted to respond to you after reading about your symptoms/concerns. I had my mitral valve repaired almost 4 years ago (Feb.). After reading many postings on this board about various members' problems, I feel complelled to put in my two cents about my experience and give some advice. So here goes...like you I had a "weird heartbeat" especially when sitting or laying down. I brought it my doctor's attention and likened it to a 'backwards heartbeat'. I was diagnosed with MV prolapse and was followed for about two years with EKG's. I was told that this condition was very common in woman and nothing to worry about. After a while though I asked to see a cardiologist just to make sure everything was okay. The cardio seconded the diagnosis of MV prolapse and said he would monitor it, adding that I may "eventually need surgery." Surgery seemed so 'out there' for me as I never even had the flu, so I immediately went for a second opinion. It was the best thing I ever did. We are a former military family and my first cardiologist was a civilian (or regular) doctor. I decided to go to a military doc since I thought the first cardio just wanted my money by saying he needed to monitor me. But to make a long story short, the military doc told me that not only would I eventually need surgery but that I should have it as soon as possible before I actually needed it. His reasoning was that heart damage would eventually occur (in the way of enlargement) and I should repair the MV before any damage was done. So basically I had "elective" heart surgery...that is a term that sounds crazy, doesn't it. But here's my two cents - after being a member of this board for the past month and reading many, many posts about people's experiences/problems/symptoms, etc. I would venture to say that I was given expert advice about having surgery done before it was necessary. I had no damage/enlargement therefore my repair made my heart better than before. It was amazing to me how much better I felt after my surgery. I really didn't think I had any symptoms until after my repair and I was actually able to walk up a flight of stairs without breathing hard. I just always thought I was out of shape even though I'm thin. So my point is this...although MVP is not uncommon and many doctors will tell you it's nothing to worry about until you show severe symptoms or damage, don't wait to get it repaired. Obviously nobody wants to have the most major of surgeries, but if you can fix a problem before it becomes really serious my opinion is to do it. I realize that everyone has their own experience and views but I wanted to share mine with you and the rest of the members. Good luck to you and keep reading the posts. I know you'll find some great information here.
Fondly, Fran

[Wise]

I would be a bit careful of a doctor that just does an EKG, knowing you have MVP, when you report the symptoms you did. I only say this because it seems that many doctors are quick to dismiss younger valve patients strictly due to age. They just can't wrap their minds around someone young having issues, if it's not something they specialize in. They assume only older people have heart problems. When I was 27 I had a doctor try to prescribe Valium to me because he thought I was conjuring up my symptoms because I was young.

Given your current symptoms when working out, I would advise that you not work out until you see a cardiologist and get an echo done. Don't put this off.

I know that this all probably frightens you, but you are better off informed about what your current state is.

Keep us posted, and let us know if we can answer any more questions.

I totally concur with Karlynn. I would still think my only issue was MVP unless I had some family history issues. Because of being monitored due to family history, I'm now being watched for MV & AV regurgitation. Given your symptoms, I'd definitely advise an appointment on the echo table.

Welcome to the site. Best wishes.

[Maureen]

Carrie...I know exactly what you are going through! I was diagnosed with MVP ( with regurg) at age 22, I have just turned 41. Initially I was told it was no big deal, don't worry about it but I was told to take antibiotics before dental work, surgery etc. After having a baby at 27 things started to go downhill. Shortness of breath, fainting/near fainting episodes. I have had a terrible time with cardiologists who take one look at me ( young, non-smoker, not overweight) and say I have nothing to worry about! The last guy I saw implied it was all in my head and wanted me to take valium....this was 5 minutes after he had met me for the first time. He was the first Dr ever to imply this and he has completely shattered my self confidence.

Over the years I have had several attempts at working out in the gym. I found I could walk quite quickly and for as long as I wanted but as soon as I set the machine to "incline" I was in trouble:eek: Heart rate would shoot up, gasping for breath and face turning that lovely red/purple colour! As for the exercise bike...1 minute on that and I was seeing stars. I explained all that in my last visit and the cardio's helpful suggestion was that I needed to go back to the gym and push myself harder.....I told him that if I did that I would pass out and that the gym staff wouldn't let me back in! His answer...he actually dictated a letter for me to give to the gym stating that there was no reason why I shouldn't exercise:rolleyes:

This all took place last August and to be honest I was so upset afterwards that I have sworn not to go near a Dr for as long as I can. I know I'm being stupid but I just can't face it. I know that there's something wrong but I'm so afraid of meeting another cardio like the last one. I visited a friend last week who was sick in bed...after going up the stairs to her bedroom, I couldn't carry on a conversation with her.. I tried, but had to keep stopping for air. My sensible head says "this isn't right, go to the Dr" but my fear of not being believed is greater.

I suppose the reason I'm writing all of this is to say "please don't let them tell you it's nothing"....insist on an echo at least. I sincerely hope you are able to find a decent cardio who will listen to you.

[Carrie]

Ok, I made an appointment for 1/23 just to ask for a referral to a cardiologist. I've done more reading and it seems I should have had a least a couple more echocardiograms to monitor, just in case. I will insist on both the referral and the echo and will suggest a graded exercise stress test, since that is when my symptoms are the most noticable and bothersome. I'll let you all know what the results are.

- Carrie

[Karlynn]

Good girl!:D

You are your own best health care advocate and it pays to keep on top of things. Keep us updated.

[Georgia]

Maureen, I hope you've found a cardiologist by now. You simply cannot swear off doctors just when you need one the most. You shouldn't have the problems you have - you're too young. Many of us here have "doctor shopped" until we found one who takes us seriously (cit. ref. "Aussigal").

Women particularly are often brushed off as "hysterical." When I was in the hospital with congestive heart failure two weeks before my valve surgery, my pcp arrived with Ativan to "see if some of these cardiac problems are related to your anxiety." This was the same guy who'd entirely missed my cardiac problems, even tho I'd been diagnosed with mvp 20+ years before.

Please please please try another cardiologist. Furthermore, if you can, you should try to get copies of your medical records back to when you were first diagnosed wih mvp. I promise you'll eventually find someone who believes you.

And Carrie, good for you. You go, girl!!!!

[Carrie]

Ok, well I saw a regular doctor at my clinic today and she was able to hear it with her stethoscope. (They never could hear it before, but I also don't think they looked as hard. She could only hear it when she had me lean forward.) Anyway, I've got an echo scheduled for next Tuesday, then she wants to follow up with me and decide at that point if I need a cardio referral. I'm not sure at all what I'm hoping for at this point, lol... :confused:

[PJmomrunner]

Let's see...you've had diagnosed MVP for 20+ years and your GP is going to look at your echo report and decide if you need to see a cardio...? Sounds like you belong to an HMO.:D

[Karlynn]

Let's see...you've had diagnosed MVP for 20+ years and your GP is going to look at your echo report and decide if you need to see a cardio...?


Been there, done that. Had an internist almost kill me (not an exaggeration) because he thought he knew enough to handle my MVP...and was just sure I was making it sound worse than it really was.

Make sure they give the cardio referral. And in the meantime, check your insurance to see if you even need a referral.

[Carrie]

I'll see what happens at the follow up and if they won't give me the cardiologist referral at that point then I'll see if I even need a referral. I know I need a referral from my clinic's standpoint, to be seen by any of their specialists, but I'm not sure if my insurance requires it or not. I don't have an HMO, it's something else. I have a really big choice of doctors I can go to, so if this doesn't work out I'll go somewhere else, but I'd like to stay with this clinic system if at all possible. She's also going to try to get my echo report from when I was younger, for a comparison. I'm hoping all this will be a moot point and that I'll get referred for the cardiologist.

**Edit** Ok, I'm scheduled for my follow-up after the echo on 2/7/06 so I'll let you guys know the results then. :)

[Carrie]

Ok, I've got another question while I'm waiting to be seen and find out what's going on in there. Not sure if I should start a new thread or just keep it in this one until I know more, so I'll keep it here for now.

About a year ago I started getting swelling in my feet and ankles. I have NEVER been a "water retainer" and have never had anything like that before. I went to the doctor for it and they could find no reason for it. It was "pitting edema" where if I pushed in on the swollen areas, it would say pushed in. :eek: Gross! Anyway, since then I've been trying to watch my salt intake and that seems to have relieved the problem. My question is: Is this possibly a part of the symptoms I'm having, or completely unrelated? I have an office job where I am seated a lot, but I get up frequently to go to another area of the office for the fax machine, printer and copier and I take several trips up and down some stairs every day, so I don't think I'm either sitting OR standing too much at one time.

I just wanted to ask here first if I should mention it. I don't want the doctor to think I'm a nutjob, lumping in all kinds of "mysterious ailments" and have them take me less seriously because of it, but on the other hand I don't want to leave out a serious symptom, if symptom it is, so I thought I'd run it past all you experts first. Thanks a lot, and I've already learned a TON from reading this messageboard. :)

- Carrie

[MikeHeim]

You definitely need to mention it. Swollen ankles and feet is one of the common symptoms of valve insufficiency. It could also be unrelated water retention, but should be mentioned to the cardiologist nonetheless.

[baradonai]

Hi Carrie
I had similar symptoms as you. Although I was never really athletic, the last 5-7 years I never had energy to do anything. I had the strange hard beat as well. An MVP was detected about 3 years ago and was "monitored" by the yearly stress test.

It got serious the end of 2005 when unbeknownst to my Dr. or myself , my valve got infected with strep. It seems despite the antibiotics for teeth cleanings, etc. the worst had occured. It took a stroke and 3 months of ruling out everything from sinus to the flu before the infection was detected. By then it was too late. The valve was pretty much shot.

If you ever get a low grade fever that you can't shake after a couple of days, chills or night sweats, get your valve looked at quickly. Who knows, maybe if we had found my problem sooner perhaps it could have been repaired rather than replaced.

:)

[Georgia]

You need to start a list of symptoms and take it with you.

Water retention that bad is certainly not good.

And is this the same doc who sent you for an EKG instead of an echo???

How about vision problems (auras? gray spots?) Cramping in the muscles in your back? Waking up in the middle of the night and can't breathe? Started using a fatter pillow to help you breathe? Some aching in your neck?

Valve problems can cause weird, seemingly unrelated symptoms, that no one tells us about.

[Carrie]

I don't get shortness of breath while laying down, but my hearts pounds really hard and it makes it hard to sleep. I do get a stiff neck, but then I have had neck troubles since I had a car accident in '95 so that's nothing unusual. I DID make a list though, and this is what I have so far that I am taking to the doctor. Please let me know if you (any of you) think I left something out, as I am feeling kind of confused and overwhelmed lately, heh... also, they were different doctors. I try to see MY doctor when possible, but it's faster to get an appointment if I take whichever doctor has the soonest opening, so that is why I've seen several doctors. Anyway, here's my list:

1. Extreme shortness of breath during exercises such as swimming, bicycling, hiking/walking up a hill, climbing stairs, doing aerobics class and running/jogging. I actually can't swim, bicycle, hike up a hill, climb stairs or jog for any great length of time before I am forced to stop.

2. For about a year now I've had pitting edema in my ankles and feet off and on. I've tried to reduce the sodium in my diet, as there was no cause found for this. It still happens occasionally and I can't seem to figure out a pattern for it. I've never "retained water" prior to this.

3. Increasing palpitations. Pounding heartbeat makes it difficult to fall asleep.

4. Asthma symptoms after aerobics class. I usually only get asthma attacks while exercising in very cold weather or after triggering my allergies to "small furries", i.e. rats, rabbits, hamsters, etc. Asthma (congested-feeling lungs) after regular exercise is a new symptom.

5 Sometimes in the afternoon in my office my fingernails will turn purple/blue at the base. I attributed this to it being cold sometimes in my office, but the color they turn has actually alarmed several people. It is not uncomfortable, just colorful."

That's all I've got so far. I've been doing SO much reading and I understand a lot more than I did before, but now I'm wondering how I could have thought any of this was normal. This stuff really does sneak up on you, doesn't it? It's SO hard waiting to find out anything, and it's hard to think about anything but this. I'm glad you all are here. Thank you.

[Carrie]

I had my echo done this morning but of course the tech wasn't allowed to tell me anything, so I'm waiting until next Tuesday to find out. It was confirmed though, that I DO have a heart! I kind of felt sorry for the poor thing as hard as it works all the time...

[Mary]

Carrie,
Please get a copy of the echo after your visit next Tuesday. It's very important that you have the results to compare with any subsequent ones. Please don't rely on someone else to keep track of your numbers.

[afraidofsurgery]

Keep doggin' it with your doctors. As you report it, you have the symptoms I was always asked about during my 12 years of watching and waiting for my aortic valve surgery: Any swelling in your ankles? Any shortness of breath w/ exercise? Any problems laying down? Has anything changed from the last visit?

My "trigger" for surgery was I was struggling to keep up with my pretty average exercise routine, was very tired, could hear my heartbeat very loud (including murmer).

If I just walked into a GP's office, no one would have EVER guessed I had moderate/severe regurgitation. My leak was very loud, so if they listened it jumped out at them. I loved to watch the look on their faces!!!

Patty

[Carrie]

Wow, I am so completely stunned and upset right now. I received a message from the doctor's office saying that my echo was completely normal and that I don't even have mitral valve prolapse... I am not sure what to think now. It was not diagnosed as an incidental finding. I went to the doctor because I started having problems in junior high. I had always been an active and healthy child but suddenly I couldn't run without becoming totally out of breath. That has never changed. I've already shared with all of you all my other symptoms. How is it possible that I don't even have MVP? I mean, not that I want it, but I certainly don't want to be so limited by my body for no apparent reason. I guess I'll have to get a 2nd opinion, but what if they say the same thing? The phone message said if I am having any symptoms to follow up with my regular doctor. I haven't actually seen her for this. Do you think I should go to my regular doctor or go find another clinic system and start over there? And if I start over, are they going to want to do their own echo? If so, I wonder if my insurance would cover a duplicate test. Oh, this stinks. :( I just want to be able to run and climb hills and do my aerobics class without getting so out of breath that I HAVE to stop because I can't get enough air. I was really not expecting this answer from them and I am shocked.

[PJmomrunner]

Get a copy of the echo you just had done and bring it to another cardio for a second opinion. My aortic valve insufficiency was found on an echo that was done to check for suspected MVP (which I did not have) and the same echo was not useful in determining the left ventricular dimensions (although if it had been done properly it should have been). My point is that if you bring the echo to a second cardio, in addition to having it interpreted by another doctor, you may also find out whether the echo itself was done properly or thoroughly. If it turns out you have no valve issues... great! Of course then you'll need to start exploring other causes of your symptoms with your regular doc....

[Karlynn]

You obviously have something going on, because you have symptoms and you have a medical history of issues. Unfortunately you weren't followed closely, so it is quite possible that MVP was misdiagnosed back in 82 (?).

I echo PJmom's comments. Get copies, go see another doctor. It's possible that it may not be the mitral valve, but be another valve that they didn't get much of a look at.

[Wise]

A second opinion sounds like an excellent idea. However, in the time frame you were initially diagnosed, per my cardio, there was a lot of misdiagnosed MVP. I was checked again in 2002 or 2003 and my MVP was confirmed, but going into the test the cardio was betting on an initial misdiagnosis. He was wrong. The result of the echo depends in part on the skill of the technician also. I agree with Karlynn that it could be another valve. My BAV wasn't detected until 2004 and I had previous echos with no mention of it. Anyway, good luck and I hope you find out the source of your problems.

[Karlynn]

I also wanted to say - don't give up until you get answers. You know how you feel, and you know how you should feel, so don't let the doctors talk you into sitting back and accepting it.

[Atlanta Sweetheart]

I was diagnosed with MVP when I was 22, I had two children and no problems. At age 50 I went to a new primary care physician, she thought I should see a cardiologist for the MVP as my click was a loud murmur. At that time the cardiologist just wanted to watch it as it was leaking, but within the accepted parameters. I had no symptoms, I was out of breath when running up stairs and I'd have occassional chest pain when sleeping on my left side. I had unrealized at the time irregular and racing heart beats. Five years later a new primary care physician listened to my heart, had me do an immediate ECHO and then a visit to the cardiologist was scheduled. My heart had not yet enlarged but the volume of blood in my left atrium had doubled. Long story short I saw the surgeon had surgery in July. It was amazing -- a quiet heat beat, a heart that doesn't race without reason and I feel great. Please get checked and follow the recommendations of your Dr's. Good luck to you and keep us all informed.

[MelissaM]

So. . .if you don't have MVP, then what, praytell, did your PCP hear through her stethoscope? She heard something - enough to send you for an echo.

It was not clear if your echo was read by your PCP's office or by a cardiologist. If it was your PCP's office, figure out your insurance and get yourself to a cardiologist. Take your echo tapes and measurements (should be available to you) to the cardiologist. They should not have to do another if they have the tape.

And keep at it.

[Maureen]

Carrie...I am so sorry that you have had this response. Our experiences are almost identical. I was told 18 years ago that I have MVP with regurg and yet last year a Cardiologist that I had never met before took a quick look at my file and said that I probably didn't really have MVP, that it is often "over diagnosed" :confused: She was only with me for a few minutes while she carried out a quick test. Later when I spoke to the Cardio dealing with my case I asked him "do I have MVP or not?"...his reply..."yes"...so I told him what she had said and his reply..."well it all depends on how you interpret the results...some Dr's have a stricter criteria" .

Like the others have said, please don't give up. You know you're body better than anyone. You are young and you should not be feeling like this. I was so disheartened with the treatment from my last Cardio that I swore never to go to a Dr again. I have now seen sense and have seen my GP to start the ball rolling again.

BTW...you mentioned your hands/fingers turning blue....I have the exact same thing! I have noticed that if there is the slightest change in temperature..even moving from one room to another, beds of my fingernails go almost black :eek: The same applies to my lips :eek: Just like you, I have scared a lot of people in my time! It sometimes happens even when I am in a really warm room if I am feeling short of breath/heavy chest. Of course I asked the Cardio about it and he said he had no idea why it was happening :rolleyes: My own theory is that there just isn't enough oxygen circulating around the body....due to leaky valve?

I hope you get the answers you are looking for....please keep us posted. Take Care.

[Carrie]

Well, I'm not sure if I even belong in this forum anymore, but until they know what's wrong with me, I'll stick around, ok?

Anyway, here's my echo report:

This study included two-dimensional echo, pulse, continuous wave and color Doppler.

INDICATION FOR EXAM: Palpitations (785.1)

DEFINITY: 0 cc

MEASUREMENTS:

LV (d) 44 mm (37 - 56)
LV (s) 28 mm (23-34)
Septum 8 mm (06-11)
LV Wall 8 mm (06-11)
EF: % (>55%)
FS 38 % (>25%)
RV (d) mm (07-26)
Ao Root 28 mm (20-37)
LA 35 mm (19-40)
AVA cm^2
MVA cm^2
Mean Ao Grad mmHg
E 89 cm/sec
A 70 cm/sec
E:A 1.3 ratio
DT 189 ms
RV/RA Grad mmHg
Est RA Pres

The above measurements are done in the two-dimensional view.

CONCLUSION: Normal study.

GENERAL COMMENTS: Normal study. Adequate quality two-deminsional was performed and interpreted. Adequate quality pulse continuous wave and color Doppler was performed and interpreted.

RHYTHM: The patient's rhythm is sinus.

VENTRICLES: Left ventricular chamber size and wall thickness are normal. Visually estimated left ventricular ejection fraction is 60%. Normal left ventricular filling pattern for age. The right ventricle is normal.

ATRIA: Both atria appear normal.

VALVES: The aortic valve is normal. Trace mitral insufficiency is present. Mitral leaflet thickness is normal. Mitral valve prolapse is not present. The tricuspid valve is normal. The pulmonic valve is normal.

GREAT VESSELS: The following segments of the aorta are normal: sinuses of Valsalva, sinotubular ridge, ascending aorta, transverse arch, and proximal descending aorta. The pulmonary artery is normal. The inferior vena cava is normal.

PERICARDIUM: No pericardial effusion is present.
__________________________________________________ _______________

The doctor said she was surprised at the results, as she was expecting to find something too. She is sending me for pulmonary function tests and an appointment in the pulmonary department to see if it's something with my lungs, rather than my heart. Anyway, you guys said I should post the echo results, so there they are. My appointment with the pulmonary folks is on 2/24/06, so I will let you know what they say. One good thing: I get the feeling that my doctor believes me and is taking me seriously, so that's good. I also asked about the exercise stress test and she considered it, but wanted me to go to pulmonary first. We'll see what happens....

[Mary]

Carrie,
I think the decision to send you to a pulmonologist is a good one. Obviously you're having difficulties, and you're ruling out probable causes one by one. Please let us know how the appointment goes. Thanks for posting the results.:)

[Barbara Stewart]

I almost feel like this is beating a dead horse, but listen to what everybody says. I'd just like to add BECOME ASSERTIVE:eek: about your health!. I had MVP forever and it wasn't until I was 52 that I found out about it and at 56 just had my second surgery in less than a year.
Do some research on Pulmonary issues. You obviously have a problem and the sooner you get it diagnosed you can start to figure out what YOU want to do about it and how you want to manage it!
Good luck,
Barbara:)

[Carrie]

Hi guys!

I just got home from my pulmonary functions tests and the follow-up with the pulmonologist. She said that judging from my symptoms and the test results, that I've had more severe asthma than I thought and that it's gone untreated all this time. She's starting me on Advair 2 x a day and I'm supposed to use my albuterol before exercising and not be so slow to use it if I become out of breath at other times. I've got a methylcholine (sp?) challenge test scheduled for April with another follow-up with the pulmonologist to see how the test turns out and if the meds have had any effect.

She was REALLY thorough; spent about 45 minutes with me, asked a lot of questions and answered all of mine. She also expressed how badly she felt that all this time I've been unable to do, or limited in how well I could do the things I enjoy for over 20 years all because of a misdiagnosis. She said she is very sure (but won't say definitively until the next test) that asthma has been the problem all along and that with the right medications I should be able to do all the hiking, biking, running and swimming that I want!

I never considered asthma, I guess because of my misconceptions. I thought that the only time my asthma was acting up was when I became wheezy and and coughing from either exerting myself in cold weather or going to a petstore with lots of rodents and bunnies. Apparently just regular shortness of breath can be asthma too, and I never knew that, so never considered it as a possible cause. After all, I only need my inhaler (or so I thought) maybe 3-5 times a year.

I guess I may be leaving you all once I reach the end of this "story" since I don't have a valve problem after all. I'll let you all know if the medications start working (she said it will take up to 2 weeks to feel a difference with the Advair) and what happens with the next test and visit. Then after that, well I guess there won't be a reason for me to be here at this forum. You have been wonderful support and encouragement for me, regardless of what my actual problem was. I didn't give up and it was because of all of you! You are a very special bunch of people and I have enjoyed getting to visit with you. Like I said though, I'll let you know what the next test/doctor visit says. :)