Mitral valve prolapse (MVP)

[Lofts91]

Hi all,

Does anybody here also suffer from a heart condition called mitral valve prolapse, or MVP for short? After years of undiagnosed symptoms (chronic pain, fatigue, palpitations, shortness of breath etc.), I was finally given the diagnosis in my mid-twenties. The symptoms often imitate the symptoms of chronic conditions known as the "Great Imitators", including chronic fatigue syndrome or fibromyalgia.

If you want to read about the condition, or about my diagnosis, you can do so in this piece I produced in recent months:

echo.co.uk/blog/the-challen...

If anybody here has the condition, it'd be great to hear you story, too.

Thanks,

Joe

[marypw]

Hello, I have just read your blog - despite being way older than you I identify with some of your issues!

I was diagnosed with lupus and fibromyalgia in 2010 - odd, vague symptoms for years! During the initial investigations I was found to have a moderately leaky mitral valve. This has now progressed to almost severe so I am looking at surgery in the future. And yes, you can definitely feel like a hypochondriac when you frequently feel like you have flu but don't know why!

I do think that understanding and knowledge about your condition is really helpful. If you haven't already done so, check out Dr Sanjay Gupta's (York Cardiology) videos on YouTube - they give really helpful, clear information about mitral valve problems, palpitations etc. I emailed him about one of them and was really surprised to receive a personal reply!

Best wishes

[BigT2013]

I was diagnosed with a prolapsed Mitral Valve in 2012

Last year Sept 2017 I had a T.O.E procedure which showed my valve wasn't just leaking. It was a very severe leak and severe regurgitation!!

Plus during more tests they found I had a hole in my heart from birth but had never been picked up.

Feb 2018 I had open heart surgery 😷

The valve and hole are now repaired.

Had a slight hiccup in my recovery but doing well now hope to be back at work soon.

BigT

[lifelover55]

Hi Joe. I was diagnosed with MVP in 1992. An echocardiogram showed mild regurgitation and although it stayed "mild" I suffered the same symptoms as you have, that worsened over the years. Doctors kept telling me everything was okay. I didn't feel okay. I had a CT angiogram and echo in February 2016 that still showed "mild". Then, in March of 2018 I suffered a cardiac arrest and an echo showed that my mitral valve was moderate to severely blocked and my aortic valve was severely blocked. I had an AVR and a mitral valve repair by open-heart surgery in April 2018. I haven't felt this good in years.

The AVR was because I was born with a bicuspid valve - no doctor ever told me that I might have valve trouble one day so I never worried about it.

Best wishes to you Joe and thank you for your blog.

[Hidden]

Hi, I had a “slightly floppy” mitral valve thought to be due to my EDS (genetic condition where your body doesn’t make collagen, the connective tissue, correctly so it’s extra stretchy). I was told it’s quite a common feature in women too. I used to have a weird whistling from my chest after a long run. I changed to weightlifting (unrelated) and the whistling stopped. I now have my heart checked annually as I now have SSc (a horrible autoimmune disease) and the last check they said my valve had corrected itself! I put it down to the strength training (which also took my calling function from normal range to athlete range) but one doctor did dismiss the improvement as stiffening up with age (which I don’t really think is true since my collagen is built wrong, age wouldn’t change that I also just had myocarditis with a 9 month recovery (reading this as I write it, I look like the unluckiest person ever😂) so it’ll be interesting to see how that valve is now, probably fine

[Hidden in reply to Hidden]

Lung function not calling function!