New Criteria for MVP

Discussion in 'Fibromyalgia Main Forum' started by Nikki, May 19, 2003.

  1. Nikki

    Nikki Member

    How many of you with MVP have had a recent Echocardiogram and been told you do not have a prolapsed mitral valve according to the new criteria for MVP? For eighteen yrs I've been taking meds (Inderal) for prolapse symptoms + antibiotics before dental work. Just last week I requested that my PCP do another Echo because my symptoms had intensified (my last Echo was 18 yrs ago), and yesterday I received word from his office that I no longer fit the new criteria for MVP. Of course, his nurse had no idea whether or not I should wean myself off the Inderal (which I've taken for 18 yrs. and which the dr. had just recently doubled) or whether or not I should continue to take the antibiotics before dental work. The nurse said she’d ask the dr. today and get back to me. I wonder why I still have these awful symptoms like too much adrenaline (the fight or flight kind), heart murmur, angina, extra heartbeats, palpitations, and fatigue. Has this all been part of the FMS which was just dx'd in March. Two friends of mine were also given the same diagnosis (no MVP) after yrs. of being on meds (they don't have FMS though).

    Nikki

    [This Message was Edited on 05/20/2003]
  2. Nikki

    Nikki Member

  3. Daffodildeb

    Daffodildeb New Member

    Nikki:

    Could it be that you have Mitral Valve Prolapse SYNDROME and not "true" Mitral Valve Prolapse? MOST physicians (and nurses) I have encountered do not know the difference between MVP and MVPS.

    Although I was initially diagnosed with MVP (in 1986), the diagnosis was a mistake: I actually have (and have always had) MVPS.

    Last year, my Cardiologist's nurse told me (as she was reading the results of my echocardiogram): "You don't have MVP, you know." I told her: "I never said I have MVP. I have Mitral Valve Prolapse SYNDROME. There IS a difference, you know." :)

    Thankfully, my Cardiologist does know the difference between the two, but it is (in my experience) VERY rare to find a health care provider who does.

    Blessings,

    Deborah L. Mayers RN,BSN,BA,MLibr.

  4. Madelyn

    Madelyn New Member

    I've been told I have MVP, then, no I don't, then yes I might after all. I do know thst I have either MVPS or something identical,a,k.a. DYSAUTONOMIA. We're working on it...

    Mad
  5. kerrymygirl

    kerrymygirl New Member

    I was told awhile ago I had mvp. My test in 02. Showed mitral regurgitaion, on mitral and tricispid. Also stated under Mitral mvp. The rest showed within normal limits. My doc said do not be concerned you do not have mvp now. I guess I am a tad corn-fused too. Geez, just to much research we have to do on everything. What are they getting pd. for. Almost everything I have done to help myself is done by myself. I am on information overload and I am an informational reader. My brain is fryed!!! Once again you do not have to comment on that. Do not know what to tell you??? Except it could be another syndrome thing. I am still researching, Again... What happened to the GP 1 doc who knew everything. My uncle was an old fasioned GP took care all of us, did pretty well for us all.

    It appears I have dysautonomia on top of allll the rest. That might be what is going on with you.
    [This Message was Edited on 05/20/2003]
  6. Daffodildeb

    Daffodildeb New Member

    MVP is a STRUCTURAL dysfunction of the mitral valve. MVP Syndrome is another term for "dysautonomia" (an imbalance of the autonomic nervous system).

    I continue to take antibiotics before dental procedures per my DENTIST's recommendations.

    Both my Cardiologist and Dentist are very "cautious" individuals---preferring to be "safe" now than "sorry" later.

    Deb :)
  7. Nikki

    Nikki Member

    I appreciate the info. After doing a little research with the info y'all provided, there's no doubt that I have dysautonomia.

    Nikki
  8. TaniaF

    TaniaF Member

    My autonomic nervous system acts wacky at times--it's dysautonomia. I have a trace regurge but no specific MVP. The syndrome gives me palpitations, with an occasional tacycardia attack, flutters, dizziness, weakenss and so on. I have been taking Calan (calcium channel blocker) and Xanax for this disorder. I do believe the FM makes the symptoms worse. All in all, I never do any dental work or medical testing without antibiotics.
    It would be interesting to see how many of us FM's have MVPS or MVP too.
    Tania
  9. kerrymygirl

    kerrymygirl New Member

    They do not give me antibiotic before dental but they always talk about it.
  10. AutumnGirl

    AutumnGirl New Member

    I was only instructed to take the antibiotics before dental work or any surgery, etc. They wanted to do more extensive tests on me when I was a teenager, but I went into a total panic when I discovered what they were going to do and how (catheterization.. sp?). I still get palpitations that can last up to an hour, third heartbeats, "butterfly flutters," and the whole nine yards. Who knows what the new criteria would place me in...didn't even know there was new criteria.

    Ella
  11. klutzo

    klutzo New Member

    (Personally, I suspect it's higher, maybe 100%, but up to 40% of MVP's are missed on Echos due to improper patient prep). FMS is listed as a symptom of MVPS! Do a websearch on MVPS, and you will find some very interesting stuff. I am one of the "lucky" ones who has both MVPS and an actual heart valve problem with regurgitation o both the mitral and tricuspid valves. My understanding, from my Cardiologist, is if you have any regurgitation, no matter what they are calling it, you need the antibiotics before procedures involving blood.
    Klutzo
  12. AutumnGirl

    AutumnGirl New Member

    Before they decided it was MVP that I had, they thought it could be a tiny hole in my heart. And they still had the same recommendation: Antibiotics before/after dental and surgery.

    Interesting stuff, huh?

    Ella
  13. Nikki

    Nikki Member

    My PCP (Internal Medicine) did my recent Echo and read the results. Maybe I should consider going to a cardiologist. My PCP's nurse called yesterday (at my request) and told me my Dr. said it was up to me whether or not I continue taking my Inderal. I had previously tried to wean myself off of it (rather successfully at first) only to have my symptoms come back twice as strong. I,too, believe the FMS has acerbated my symptoms. I suppose I'll have to continue taking the Inderal, because I'm too miserable w/o it, even tho it's not even working very well anymore. It's also up to me whether or not I continue to take the antibiotics before dental work, etc. But in view of what some of you have been told, I think I'll take those, too. Better safe than sorry. This board is very informative. Thanks, again................Nikki
  14. Cactuslil

    Cactuslil New Member

    I wish someone would tell me I did not have MVP; I would sleep better at night!

    Sounds suspious to me...I'm the conspiracy type.

    Perhaps since US medical care is screwed up it is just easier to change the criteria for an ailment rather than examine it,treat it et al.

    I recently had a sleep study and out of the blue learn I am with acute sleep apnea! Last night I had to sleep in my bed and to my utter sorrow and disbelief I am in a full hospital bed, taking compressed O2, with a somethingor other so the air is heated as it enters the lungs.

    The joy of my life was my dear poodles on my bed at the end of the day, with my son studying beside me. The widow cracked so we could smell the special odors of a Texas night. Now the sound of oxygen being forced in my lungs is all I can hear. My dogs in general don't cotton to the hospital bed and I find my only consolation a heating pad; I guess it feels like my beloved dogs used to feel as they laid their warm bodies upon mine.

    This is undoubtedly the toughest order from the doc I have ever had to follow. Lil'
  15. Princessraye

    Princessraye New Member

    Please find out for sure before going off of your medicine.
    That really concerns me.
  16. Nikki

    Nikki Member

    My father had to have a mitral valve replacement about 4 yrs before his death in 2000 (he was 78 when he died), so I'm pretty sure his valve WAS prolapsed and worn out. Almost 4 yrs after, he chose to have a pacemaker which was somewhat experimental. Six days later he died. He was an old WWII fighter pilot and was willing to try anything to live a better life (and boy do I miss him . . . I thought he'd live forever). Since I was dx'd w/MVP long before he was, he always joked about inheriting his MVP from me. Now, I've been told I don't have one. It just makes you wonder about the medical profession.

    Catuslil, I'm so sorry you're having problems w/sleep apnea. After reading some of the posts on this board, I'm always grateful to God that my problems aren't any worse.

    Peace.....................Nikki