Newcomer with a question

[Maureen]

Hi, My name is Maureen. I am 40 yrs old and have recently come accross this excellent site. I'll try to keep this short!. I was diagnosed with MVP at age 22. Told not to worry...no meds needed although I was occassionally short of breath climbing stairs/hills etc. At age 27 I had my beautiful daughter. Afterwards I felt that my symptoms were getting worse. Short of breath, feeling faint/weak. Found a Cardiologist who did a TEE and said there was slight leakage from Mitral Valve but thought we should wait and see! More years passed and the symptoms slowly got worse. Last year I saw a different Cardiologist ( due to moving house/location ). He did a stress test and at the end I felt quite sick/faint, feeling that I was very familiar with and always attributed to the MVP. He didn't seem interested in discussing the MVP and ordered an angiogram. The result was clear and basically he dismissed me and said "come back in a year for a check-up"!! I waited another few months and then asked to be referred to another Cardiologist as I couldn't bear to go back to him. Saw the new guy 2 months ago. He read out the referral letter and there was no mention of MVP...I should point out that I only realised this AFTER I had left his office!. Anyway he decided to do a carotid artery massage as I had been having symptoms of weakness/slowing of heart rate when I had my head in certain positions. Had the test and the Dr who did it said it was fine. While she was reading my chart, she mentioned that the last echo on file was "clear". I said I had MVP and how could I have a clear eacho? Her answer.."loads of people are told they have MVP when really they don't..there's nothing wrong with them, it all depends on how you view the echo results" !!!

I have an appt tomorrow with the cardio to get the "official" results from the Carotid Massage. Obviously I am going to bring up the subject of MVP!

My reason for posting is:

Has anyone out there had "clear" echos after they have been diagnosed with MVP?

Do your symptoms "come and go". One day I feel ok and the next I am out of breath for the least little thing, especially if I have been very active the previous day.

Sorry for rambling on but this last Dr has made me feel like I'm imagining everything! I am only 40 years old and some days I feel like 80. I am dreading tomorrow's appt as I'm afraid that I will clam up while I'm there and walk away without answers. You guys seem to get so much info from your test results etc. Over here we get nothing except "clear" or "problem".

I'll let you know how I get on.

Regards,

Maureen.

 

[KathyH]

Hi Maureen,
First step is to get copies of all your test results. That way you can read them yourself. If you have echo's done by different Dr, there may be a slight difference in how the results are interpreted. It must be very frustrating to you, not knowing what is wrong with you and not feeling well. Good luck, don't be afraid to ask the dr questions. Sometimes it helps to write them down so you won't freeze up.
Kathy H

 

[ALCapshaw2]

Since your appointment is tomorrow (Thursday?) you won't have time to get copies of all your previous tests to review beforehand.

The best thing to do at your appointment is to bring up ALL your symptoms, mention that you were told you had MVP some time ago, and ask if another echo would be appropriate.

Unfortunately, MANY doctors seem to dismiss heart symptoms in women and you may be a victim of this type of thinking. If you are still having shortness of breath on exertion and your cardiologist doesn't schedule you for another echo, then you may need to become more adamant, or find yet another cardiologist who will.

Be sure to request copies of ALL of your previous tests for your own records so that you can compare results. Often a CHANGE is more significant than the absolute numbers.

Good Luck tomorrow!

'AL Capshaw'

 

[Karlynn]

Your symptoms do sound like classic MVP symptoms. Although I'm sure there are many other issues that have those symptoms as well. Yes, many doctors have a hard time wrapping their minds around the idea of woman having heart issues - or if they do, they assume they can't be as bad as men. You are in the drivers seat. We have all learned here that we have to be our own best advocates.

I would definitely have them explore the MVP. Are you having palipitations at all?

 

[Gemma]

Hi Maureen,
I'm in Chester, England and I know what you mean about it being hard to get test results. My boyfriend Jim had his aortic valve replaced in 2003 and we've never got any reports.
However, if you go armed with a list of questions (written down) for your doctor it does make it a lot easier to get information. I'm not sure exactly what numbers you need to be asking for with MVP, but some things you could ask/discuss are:

Symptoms (here write down everything - shortness of breath, feeling faint, weakness, slow heart rate) - if you haven't got MVP, what's causing them?

How have any heart measurements changed? (I'm guessing here but the main ones are maybe left atrial size and poss left ventricle size, and ejection fraction)

As the symptoms have been worsening, what is your doctor going to do to make you feel better?

Hopefully some other members who have mitral valve problems will be able to help you out with some other things to ask.

Bear in mind that you know your own body better than any doctor - if it feels like there's something wrong, trust your instincts and push for answers.

Good luck!

Gemma.

 

[OldManEmu]

Maureen
I can't advise you directly regarding Mitral valve problems as I had an AVR.
I agree with Gemma, write a list of questions while you are calm and have time to think of all the issues you want to raise with the cardiologist.
Then write down all the answers the cardiologist gives you.
This was what I did before I met my surgeon.
If you do not understand any of the answers ask them to explain it in layman?s terms.
Doctor can be good at speaking in medical jargon irrespective of the audience.
If you have symptoms there is a cause it is the cardiologist?s job to find it.
You may have to be persistent.
Do not let them just dismiss you.
Good luck for tomorrow.

 

[Teresa UK]

Hi Maureen - I'm in Essex and so understand that the NHS system isn't quite at our beck & call the way it is with private health cover! To be honest, I've never had the courage to ask for copies of NHS test reports! Stupid, isn't it, because we pay our taxes/NI ...... Anyway, just wanted to say I empathise with you. Had I been posting earlier, I would have suggested you take a friend or someone with you who can "orchestrate" the meeting so that you come out with the info you want. I once took my father-in-law with me and it was amazing how differently things went that time. But by now you'll have been to your appt. - so let us know how it went.