Mitral Valve Prolapse, exercise and heartrate

[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. 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]

My 2¢ worth...

My 2¢ worth...

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]

List of symptoms

List of symptoms

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]

Hi Carrie

Hi Carrie

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]

Hi Carrie

Hi Carrie

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" 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 The same applies to my lips 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 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.