Friday, May 28, 2010


All these abbreviations are starting to make me loopy. Ha!

I recently returned to a support group that I was a member of many years a go when I was still learning how to cope with my palpitations. Over 10 years a go, after finally getting up the courage to see a cardiologist, I was diagnosed with Mitral Valve Prolapse (MVP) after a routine cardiac ECHO (aka cardiac ultrasound). MVP is an abnormality of the mitral valve leaflets, or supporting chords. It is a well-recognized, clinical entity with a reported prevalence of 4% to 18%. MVP is frequently associated with a myriad of symptoms. The term MVP syndrome refers to the occurrence of symptoms unexplainable on the basis of the valvular abnormality. (That always seemed strange to me.) Common symptoms include: chest pain, fatigue, palpitations, lightheadedness, shortness of breath, anxiety/panic attacks, headaches, low exercise tolerance, and mood swings. Hello, all of the above, ME! I was glad to get a name for what I was experiencing and even more glad to find out that it wasn't suppose to kill me. I knew early on that my valve was floppy but my doctor didn't think I would ever have to have valve replacement surgery. The doctor just mumbled something about taking antibiotics before going to the dentist. I joined soon afterward and participated with others like me who had been diagnosed with MVP and its strange symptoms. The woman who started the support group, Lorelei, was a long time sufferer and had even written a book on the syndrome. For awhile, the support group had been a life line for me but eventually I felt like I no longer needed as much help and I gradually stopped coming to the site. A few years a go, I switched cardiologists and after doing another cardiac ultrasound, he determined that it looked like I didn't even have MVP! I didn't understand how at one time I had it and now I didn't. Also, if I didn't have MVP why did I have all its classic symptoms? Fast forward to today. I stumbled upon my old support group website today--only it looked very different. The moderator and creator, Lorelei, had left an important message.

Here is an excerpt of what she had written:

Times are changing; technologies are changing -- it's not surprising to find our health affected by these changes.

My journey with Mitral Valve Prolapse began 18 years ago, and in that time I've had multiple visits with cardiologists and had multiple echocardiograms confirming my diagnosis. Fast-forward all these years later and now cardiologists have more advanced machines and improved knowledge about the heart. I was just told that I actually do not have Mitral Valve Prolapse afterall.

Did I ever have it? Who knows. Or maybe it's just so mild that it's not labeled as Mitral Valve Prolapse, since only those patients who have severe prolapse are now considered to have the condition. Any case that's less severe is "not something to worry about," I'm told. I asked my cardiologist, "When you say my echocardiogram was 'normal', do you mean that the MVP is just so mild that it's nothing to worry about? Or do you mean there's nothing there at all?" Her response was that everyone's valve leaks to some degree, and it's perfectly normal. Not really an answer to my question, but the end result is the same: I don't have Mitral Valve Prolapse.
Here is So where does this leave me?

I've written a book about my experience with MVP; I've been running this web site for 13 years; I've provided this online support group for years as well. What service am I providing to all of you -- how can I be of any use -- if I don't even have the condition myself? My motivation is now gone. For this reason, I'm stepping down from my MVP soap-box.

What does this mean for you, you may be asking? Well, for starters, I will be taking down my web site. However, the message boards will remain. Too many of you have found a "home" here and I don't want to take that away.


Too many people had found a home! Did you catch that? There are so many people out there like me that have had this strange diagnosis and felt the effects of its mysterious syndrome. There are a lot of confused souls out there who have heart palpitations and fatigue and anxiety and no proper diagnosis. You would think that if it is true and technology is more advanced and doctors know more about the heart then we would know more about why we suffer with real physiological (read--not psychological, as some would like us to believe) symptoms. I hope one day science and medicine will get to the bottom of this strange and complex disease.