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Dysautonomia Doesn't Exist......


Beccapooh
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Okay, so I've been to a few sites since I've been DX with MVPS (Mitral Valve Prolapse Syndrome). Here's what I've learned so far.

1) This is the same as Dysautonomia

2) Some people in the medical community don't think that it exists. :);):huh:

Is this a joke?

Has anyone else read these claims? Has anyone run into this in their medical community?

Sorry, I'm just freaking out that I just DX with a disease that I'll never get treated for and even be considered real. So, basically, I'm a still a nutter and just a hypocondriac, right???

Any input would be most helpful!!!

Rebecca

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Welcome to the forum!

You haven't been here long enough to notice that there are many people on this forum who are taken seriously by their doctors.

The well-known doctors mentioned on this forum include, but are not limited to: Dr. Grubb (Medical College of Ohio, I think), Dr. Low (Mayo Clinic), Dr. Robertson (forgot where), Dr. Baggioni(sp?), Vanderbilt in Tenn. has a clinic, Dr. Goldstein at NIH, etc.

My neurologist in Maryland understands this ailment and there are countless other cardiologists, electophysiologists, etc. who understand.

Please do not freak out. I don't know where you live, but I'm sure you'll find someone to help you.

As a matter of fact, who diagnosed you? They certainly knew something.

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MVP most certainly exists, and (as you probably know) is a structural problem within the heart that's visible via echocardiogram. As Futurehope said, there are plenty of doctors out there who take MVP, POTS and NCS seriously and compassionately, there are also plenty of doctors who aren't familiar with these disorders and (probably out of ego) refuse to acknowledge them.

I hope you find a doctor that's helpful and eager to treat you. I went through at least 10 doctors until I found a good match, so keep at it!

Cheers,

Lauren

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Hi Rebecca,

from what I've read and learned (unless what I've read it off base) MVP is a structure problem and different than dysautonomia conditions, although a portion of people with MVP have a dysautonomia condition or the other way around....about 40% from what I've read.

I did come across some support sites that stated it is the same on the internet but I would do more reading on the medical sites to be sure of this. Is this what your physician told you?

If this fact is so, I've learned something new today.

And MVP certainly does exist......Otherwise they wouldn't suggest antiobiotics for dental work etc if it was a not real.

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Guest tearose

Hi Rebecca!

Time to find a good dysautonomia doctor! :blink:

Maybe you have a good internist who is willing to walk this path with you?

I kept my internist, bought the NDRF textbook for him and me and we studied together!

One of the smartest moves I made. Please work with someone who knows and understands you if you can!

There are many types of dysautonomia and many causes and research is still so new....this is no joke!!!

Keep a sense of humor and a spare smile in your pocket...Develop the ability to spot a bad doctor, empower yourself with the ability and permission to get rid of bad doctors (no matter WHO says they are good!) You must find someone to work with...it will make all the difference.

best regards, tearose

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MVPS --- Mitral Valve Prolapse SYNDROME, as Rebecca said is considered a type of Dysautonomia.

Most docs now call MVPS either POTS or NCS, most say its POTS. The confustion started when a doc who wasn't communicating with the rest of the community who handle diseases/syndromes like this, decided to try to make a name for himself by calling it something different and writing a book and several medical articles about it.

Most of the docs who treat and specialize in Dysautonomia don't call it MVPS, but a few still do.

Also yes, there ARE docs who don't believe in NCS, POTS, MVPS, or any other type of Dysautonomia. Mostly because there is no test that they can do and say YES you have it, NO you don't, HERE ARE THE MEDS, now you're all better. The cardio that originally diagnosed my MVP with NO regurg, still doesn't believe it exists, even though the doc that diagnosed me at Johns-Hopkins is the one that trained her! Needless to say I don't see her, and my Dysautonomia doc, who is a cardio, diagnosed the regurg which I DO have.

So what you're finding out isn't unusual. Check out the book The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide (Paperback) it does a decent job of talking about Dysautonomia and explaining what happened with the naming. Also check out the book on the NDRF.org website available for download.

Hope this helps, and no you're not crazy, but you DO NEED to find a good dysautonomia doc.

UnicornIsis

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What you are referring to is MVPS which is different from MVP. Doctors acknowledge mitral valve prolapse- it is a structural abnormality- although some discount its significance. The problem is Mitral Valve Prolapse Syndrome which refers to the dysautonomia which sometimes accompanies MVP. This is what is frequently dismissed by the medical community. But, that is starting to change- thankfully. The others gave excellent advice regarding finding doctors who do know about MVPS, acknowledge it, and know the proper course of action to take with the disorder. Also, things are changing everyday. A lot of the information you may find is extremely outdated. I had a doctor tell me once medical information is in print it is already out of date because of how quickly things are advancing with research, etc. So, something to remember.

Carmen

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Yes, it is indeed Mitral Valve Prolapse Syndrome that I'm referring to. LOL, sorry for the confusion, but, I think that this is a good point.........if WE can get so confused and mixed up then no wonder the medical community has a problem.

I know that most docs acknowlege MVP; as it is a structure problem. However, I read a few sites over the last couple of days and there was even some quack (sorry) running around telling folks that MVP doesn't even exist, even though you can see it and hear it on an echo!!! His point was that the heart is stretchy and those of us that have been DX with MVP are just lying funny on the table during our echo or what not!!! ARGH!!!!

Thank you for pointing out that things in print are out dated, I guess, I wasn't really aware of that fact (to THAT degee, anyway!!).

My cardio is the one that told me that I have the MVP with regurgitation and that there IS a syndrome out there that fits all my symptoms. She hasn't come out and said "Yes, Rebecca, you have MVPS!" My appointment with her to see my echo results, etc. is on Wednesday. She's in touch with Dr. Grubb often for another POTS patient that she has.

My TTT's were both a hair short of being "OFFICIAL", at 28 and 27 beats per minute increase. Now, I have a confirmed MVP. I have all the symptoms of POTS and have had them for years, ie. documented syncope, "irritable" heart beats (via looping monitor), countless visits to every doctor under the sun and even more tests (that have ruled out many, many other possibilites). I guess, I'm jumping the gun (as usual) but I'm just so tired of being tired and I'm so scared of being told AGAIN that I'm fine!!!!!

I'll let y'all know what she says on Wednesday I suppose. I'm really going to try and be straight forward and honest and assertive with her!!! I'm going to try to tell her everything that I tell y'all!! :blink:

Thanks for everything!!!!

Bec

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UnicornIsis,

isnt that completely and utterly RIDICULOUS that even when there is an actual DIAGNOSTIC IMAGE that sits before a doc, that they can SEE with their very OWN TWO EYES of a FLOPPY, PROLAPSING valve, that they still disregard it and the symptoms (MVPS) that goes along with it with some people?!?!?

some docs have a hard time confirming a diagnosis, but geez, when the image stands point blank right in front of you, ya think they'd be smart enough to believe what they see! it's crazy to think that WE are the ones that are supposedly nutty when there is an actual structural abnormality (whether or not MVP is "common" and "nothing to be worried about") that is seen diagnostically that they deny or INTENTIONALLY overlook.

funny that a kidney stone may or may not cause someone pain, but yet it is there/IT PHYSICALLY EXISTS/ PATHOLOGICALLY to the naked eye and docs believe it may or may not inferfere or cause an issue in someones life, and thus will keep an eye on it, check in with the patient, treat it, etc, etc............but NO NO NO, mitral valve prolapse is only a young women's hypochondriac pyschiatric issue that they all love to whine and complain about.

heart valves arent supposed to prolapse, just like kidney's arent supposed to have stones, but for some reason MVP cannot cause symptoms and a kidney stone can. THEN there are some that would evaluate the size of the stone and determine whether or not the patient SHOULD be symptomatic from it. just like MVP, to what degree is it prolapsing, mild moderate severe? and some would write off the people with symptoms who have only a mild degree of prolapse, when in all reality the degree of the prolapse doesnt necessarily matter as to how SYMPTOMATIC you would or wouldnt be.

sad sad sad.

MVPS is for real. dont let docs discourage you. there are some that dont even believe what they see and some that ONLY believe what they see. ye of little faith.

dysautonomia is for real. thank God there are some docs that realize this and can try and understand where we all are coming from.

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oh yeah, by the way, there are some docs investigating an actual connection with MVP to physically cause tachy.......and not just be secondary to dysautonomia. i know that MVP doesnt cause autonomic imbalance, and for some reasons of which no one can really understand, in many people both MVP and dysautonomia are found (MVPS).........but there is actually investigation of the prolapsing valve to PHYSIOLOGICALLY trigger or cause sinus tachycardia, but not necessarily the other symptoms a dysautonomic feels......

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Of course some of the medical community doesn't think dysautonomia exists...they don't have it and it is not as common as other illnesses (I'm sure alot more ppl are out there undiagnosed), therefore "it doesn't exist" to them!

Jacquie

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hey jacquie, you are right. dr.gibbons from beth israel told me that there's probably a bunch of people walking the streets with POTS/dysauto. but that they might not be so symptomatic to seek out a doc about it and that some even may think that their "symptoms" are normal. hey, for awhile i thought it was normal for your heart rate to be 190 after getting out of the shower and feel shaky....i learned that 190 was a CRAZY heart rate when i got into the medical field. a lot of people think that what they feel is just a normal, daily part of life because perhaps that is all they have ever felt/known! ..........so yeah, gibbons is right, there's probably a lot of people out there with POTS/dysauto that havent been diagnoed either because of ignorance of docs in believing there IS such a condition or because people think it is normal to feel what they feel cuz they have felt that way as long as they can remember (or maybe they dont think it's normal, but they have learned strategies to "get around" how they feel physically...........

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That's funny because one day when I had an apptmt with Chris Gibbons he was asking why I had no coat on in the middle of the winter, and I told him I wasn't the least bit cold out there...It's weird though, because other days I can't deal with the harsh winter weather as it affects my POTS more...Go figure!

Jacquie

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It's sad that the mediacal community seem to be in the dark when it comes to Dysautonomia, Hopufluuy in time, more reseach, and media attention that one day many will know more about Dysautonomia. Untill then its on us. You know telling others, righting letter to congress, doing anything to make it know there is a problem, that it real. Just like the fact that so many of have to fight so hard to get SSDI as they don't have a clue to what it is. ( I was told on my denial letter , to find a job it didn't had to been down in, OK it get that but I still may pass out, my heart may still face from doing other things of for just because I am having a bad day.) So many don't beleive that in changes you quality of life. Even the frist doctor that told me I had POTS, told be I would out grow it, and it wouldn't effect me that much. Look at me know. I am stuck in my house.

I find it sad that this is the way the world see Dysautonomia. But lets hope in the last year then has been more in the news, and more articals published, lets hope over time more will understand what it is like to live with Dysautonomia!!!!

Sorry about going on!

Amy

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  • 3 weeks later...
Guest Anne L

What we call dysautonomia has, over the years, had various names. MVP, CFIDS, FM, NH OH, sleep disturbances, are part of a syndrome previously called MVPS or aliases. Add a few symptoms that current tests can diagnose and it's now dsysautonomia.

My very young MD and neurologist and cardiologist had never heard of it. They were frustrated because they had no answers for my multitude of symptoms, though they were sure they were real. Young doc (20 years younger than my son) appreciated, read, and studied the printouts I took him. I admit he's a rare bird - there should be more like him.

Interestingly, when I see him for refills or something unrelated, he doesn't want to talk about the dysautonomia. That's okay because there's nothing more he can do. And current office practice schedules 10-15 minute appointments

Remember, 50% of all doctors graduated in the bottom of their class !!!

Anne

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