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Old 09-15-2005, 10:53 PM   #1
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DarkMetropolis HB User
Anyone with Mitral Valve Prolapse?

Hi. I've had extremely debilitating chronic fatigue since I was about 13 (I'm 21 now), and I've been tested for just about everything from CFS to celiac disease to irritable bowel syndrome, and everything has basically come up negative. "You don't have QUITE enough of the symptoms to meet the diagnosis for CFS, etc., etc. You MAY have IBS, but we don't know why." The fatigue is ruining my life - I can't work, and I'm in uni, but I miss half my classes. A couple years ago my dad made me go to a homeopath, even though I don't believe in that stuff, and they diagnosed me with with CFS and made me take some sort of meds, which had absolutely zero effect, which they blamed on me. I've also had OCD for most of my life, so doctors like to write off the symptoms as being part of the anxiety disorder, even though I'm not THAT anxious at present, and anti-anxiety and anti-depressant meds do nothing to alleviate the fatigue. I've had sleep tracings done, and they find I wake up far too many times at night, but they have no idea why. That's the story of my life - "yes, there's something wrong with you, but we've got no idea why." And it doesn't help that doctors take one look at my rosy cheeks and youth and immediately declare there's nothing wrong.

So anyway, I was diagnosed with Mitral Valve Prolapse when I was about 14, while they were doing tests to check for Reasons Why I'm Always Tired. But they said that it wouldn't cause me to be this tired. But recently I found stuff about Mitral Valve Prolapse Syndrome - which has absolutely all my symptoms, from extreme fatigue to irregular heartbeat to strange persistent chest pains and bowel problems and the low body weight (I'm only 114 lbs and I'm 5'7, and I keep dropping). And it's often misdiagnosed as CFS. It's not caused BY the mitral valve prolapse, but it's found in conjunction with it for reasons I don't quite get at this point, and it's also often found along with anxiety disorders. But no doctor will believe me! They just close their minds and say, no, MVP couldn't make you tired. But I'm not saying it MAKES me tired, I'm saying the two are possibly related somehow.

So, I was just wondering if anyone else here, whether diagnosed with CFS or not, has also been diagnosed with MVP?

Last edited by DarkMetropolis; 09-15-2005 at 10:54 PM.

 
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Old 09-16-2005, 02:40 AM   #2
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kiya HB User
Re: Anyone with Mitral Valve Prolapse?

I'm surprised that you haven't been diagnosed with CFS given that your symptoms and lack of positive test results would indicate that. I was diagnosed without even meeting a quarter of the criteria, which has meant an uphill struggle ever since to find out what's really wrong.

As to MVP, I'd actually never heard of it, but have just typed it into a search engine. Interestingly enough I get quite severe chest pain on occasion, which lasts a few minutes and sometimes the pain will shoot down my arm or wake me from my sleep. I've had an ECG in the past which supposedly picked up a murmur and after that I've never really bothered with it. The pain is transient and apart from during the "attack" I feel fine (I've had this since high school, aged around 15 and well before any weird fatigue started).

Very interesting though. I'm going to do more reading on this.

In my opinion CFS is actually a kind of "catch all" diagnosis which explains what the person is feeling but really doesn't diagnose what's wrong. It's quite possible that some people are more sensitive to changes in their body and are able to know when something is beginning to go wrong and hence before the blood tests or whatever can pick it up. CFS probably encompasses patients with thyroid problems, any kind of immune dysfunction, depression/anxiety disorders etc. etc.

I would guess that your fatigue and MVP are related - the website I read said that the fatigue caused by MVP "may be episodic and severe, or relatively constant", so it's more than possible that you are right to conclude some relation between the two.

 
Old 09-16-2005, 04:01 PM   #3
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NatashaW HB User
Re: Anyone with Mitral Valve Prolapse?

Quote:
Originally Posted by DarkMetropolis
Hi. I've had extremely debilitating chronic fatigue since I was about 13 (I'm 21 now), and I've been tested for just about everything from CFS to celiac disease to irritable bowel syndrome, and everything has basically come up negative. "You don't have QUITE enough of the symptoms to meet the diagnosis for CFS, etc., etc. You MAY have IBS, but we don't know why." The fatigue is ruining my life - I can't work, and I'm in uni, but I miss half my classes. A couple years ago my dad made me go to a homeopath, even though I don't believe in that stuff, and they diagnosed me with with CFS and made me take some sort of meds, which had absolutely zero effect, which they blamed on me. I've also had OCD for most of my life, so doctors like to write off the symptoms as being part of the anxiety disorder, even though I'm not THAT anxious at present, and anti-anxiety and anti-depressant meds do nothing to alleviate the fatigue. I've had sleep tracings done, and they find I wake up far too many times at night, but they have no idea why. That's the story of my life - "yes, there's something wrong with you, but we've got no idea why." And it doesn't help that doctors take one look at my rosy cheeks and youth and immediately declare there's nothing wrong.

So anyway, I was diagnosed with Mitral Valve Prolapse when I was about 14, while they were doing tests to check for Reasons Why I'm Always Tired. But they said that it wouldn't cause me to be this tired. But recently I found stuff about Mitral Valve Prolapse Syndrome - which has absolutely all my symptoms, from extreme fatigue to irregular heartbeat to strange persistent chest pains and bowel problems and the low body weight (I'm only 114 lbs and I'm 5'7, and I keep dropping). And it's often misdiagnosed as CFS. It's not caused BY the mitral valve prolapse, but it's found in conjunction with it for reasons I don't quite get at this point, and it's also often found along with anxiety disorders. But no doctor will believe me! They just close their minds and say, no, MVP couldn't make you tired. But I'm not saying it MAKES me tired, I'm saying the two are possibly related somehow.

So, I was just wondering if anyone else here, whether diagnosed with CFS or not, has also been diagnosed with MVP?
You sound so much like me!! I have had all the symptoms you have, including IBS. I have had mono for over a year and the fatigue is indescribable (although I am sure you know what I am talking about). Dizziness, Brain fog, decreased appetite, AND I am now being tested for heart problems, including I think MVP. Did you/do you have small heart pains/flutters?

 
Old 09-16-2005, 05:50 PM   #4
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dwallech HB User
Re: Anyone with Mitral Valve Prolapse?

Hi,
I was diagnosed with Mitral Valve Prolopse 5 years ago when the doctor ordered an echocardiogram after I complained of chest pains and being extremely tired. I am now 50, have hypothyroidism, CFS, fibromyalgia and multiple connective tissue disease. I had my gall bladder removed this past December and just had a ministroke in February. I do take Lorazapam to help me sleep, and Tramadol for pain. The latest problem is my legs are so painful from 2 pm until I take my medicine before bed, as I can't take the medicine through the day as it makes me nauseus. Any incite into any of this would greatly help. If I get chest pains, I need to lay down and rest, and sleep a long time as if I am overly tired. No one seems to know the answers to all of this. They tell me wtih Thyroid, MVP and Mixed Connective Tissue Disease and Fibromylagia which all make you tired. I am just tired of being tired and being in pain. I try to read everything I get my hands on. I have not been able to find a good rheumatologist in my area. I just don't know if anyone really knows the answer or where I can find the answers. My mother has leg pain which has been diagnosed as a palsy which is an early sign of Parkinsons, so who knows? Please keep in touch on the board as this is the best information I have found so far with help with answers for stroke and lots of other things

 
Old 09-17-2005, 04:14 PM   #5
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DarkMetropolis HB User
Re: Anyone with Mitral Valve Prolapse?

Quote:
I'm surprised that you haven't been diagnosed with CFS given that your symptoms and lack of positive test results would indicate that. I was diagnosed without even meeting a quarter of the criteria, which has meant an uphill struggle ever since to find out what's really wrong.
Well, apparently the official diagnostic criteria are:

1) Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis, and

2) Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours.

I definitely had the first criteria, but only about 3 out of 4 of the second, so I didn't qualify. I never had any muscle or joint pain, or headaches. I got the testing done at the hospital, and they were very meticulous. I guess it would have been easy to just say, sure you have it, minus one or two criteria, but they didn't, which I'm glad of, because a fake diagnosis wouldn't do me much good.

Quote:
In my opinion CFS is actually a kind of "catch all" diagnosis which explains what the person is feeling but really doesn't diagnose what's wrong.
I agree with this. Even if I had been diagnosed with CFS, what good would it have done? They don't even know what really causes it. My friend's mom has been diagnosed with it, and all the help she gets from it is to be able to give people a medical reason for her fatigue.

Quote:
You sound so much like me!! I have had all the symptoms you have, including IBS. I have had mono for over a year and the fatigue is indescribable (although I am sure you know what I am talking about). Dizziness, Brain fog, decreased appetite, AND I am now being tested for heart problems, including I think MVP. Did you/do you have small heart pains/flutters?
But are your symptoms due to the mono or does mono not account for them?

Yeah, I've had heart pains/palpitations/etc. A few days before I went into grade 13, I got such horrible pains in my heart - stabbing pains, and a non-stop feeling which I can only describe as "squishy", where my heart felt like it was water-logged or something. It got so bad that I couldn't move because of the pain, and my dad took me in to emergency, and they rushed about doing all sorts of tests and finally concluded - nothing wrong!! Well, that was very useful. About a day later, the symptoms started to go away though. But it was extremely irritating to be incapacitated and in a huge amount of pain, and then to be told it's either all in your head, or else you pulled a heart muscle, or some such silly diagnosis. Especially as it was getting worse over the days before I went to the hospital, not better.

Occasionally, I still get strange palpitations and the sensation of having missed a heart beat, having too many beats, etc. And sometimes the squishy feeling comes back, though never so bad as that time in grade 13. Sometimes it seems like my heart has to work overtime just to get me up a flight of stairs. My heart will be going well over 100 beats/minute after I climb the flight, and I'll have to sit down and wait to get my breath before I can move again. And at other times, there'll be no problem.

Quote:
I had my gall bladder removed this past December and just had a ministroke in February.
My dad's 60, and he just had a series of mini-strokes last November. He'd been having ones for a while before that, but hadn't even realised it. Then he had one at home and we called the ambulance and they diagnosed him with a mini-stroke and took him to hospital. Then he had two more while in the hospital in the next couple of days. He got brain damage on both sides of the brain from them, and now he's on disability because he can't work. He hasn't had anymore, though, because he's on some sort of preventative meds. He's tired all the time as well, and the doctors don't know why. He's got rheumatoid arthritis as well, so he's always aching. But as far as I know, he doesn't have MVP - he's had ultrasounds of the heart and the doctors never mentioned anything to him about a valve problem.

These are some good sites I found on MVP Syndrome, in case anyone's interested. It eerily describes my exact symptoms:

http://www.nursing.wright.edu/practice/mvp/default.htm

http://www.mvprolapse.com/dysautonomia.html

Certain things are said to exacerbate the symptoms of MVPS, one being caffeine. Which really sucks because I'm obsessed with coffee/tea/coke. Another strange thing though, and possibly related to the MVP, is that caffeine does absolutely nothing to perk me up - it actually seems to make me more tired. Anyway, that's all I've got to say at the moment.

Last edited by DarkMetropolis; 09-17-2005 at 04:18 PM.

 
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