Mystery Syndrome.

Hi all,

I just got back from the Doctors where I went complaining about chest pains that I've had for the past 1.5 years.

After a few random tests she told me that I'll need an ECG (echocardiograph... how awesome does that sound?) and a chest x-ray, because some tall, skinny men around my age have a syndrome where their heart grows abnormally or something along those lines. And I'm tall, skinny and around my age (21), so I fit the category perfectly.

Unfortunately that's all the information I got on this syndrome. I have no idea what it's called or the symptoms or implications or anything like that. I was wondering if anyone on here would recognise this and be able to enlighten me on what this syndrome is/entails?

Am I gonna die in 5 years? 5 minutes? Will I have super-human strength? Will my abnormal heart allow me to love abnormal people? With super-human strength?

I'll be doing my own research on this of course, but I figured I'd get more heads in on this.

Thanks guys!

(Also, I know this post is also in BTS, but after waiting over 6 hrs without getting a resppnse I figured that ATS is more popular and I would get a much better response here. As for the conspiracy aspect of this, it is my OPINION that the name and symptoms of this elusive syndrome are being witheld from me because my Doctor is apart of some massive NWO conspiracy where they are trying to get rid of all the tall, skinny men in the world by denying them treatment. This is it people. The smoking gun! or something. )

Sinus inversus, spectus exclavatum, right ventricular hypertrophy, Right Bundle Branch block, and Mitral valve diease.

reply to post by jbmitch


Just as I thought!

An update!

I thought I had better let you all know what's happening as clearly almost all of you are too worried about me to even type a response, but don't worry my friends, it may not be as bad as we all thought! *phew*

My poking and prodding have lead me to something called Marfan Syndrome, which effects tall lanky blokes.

Skeleton
In addition to excessive height and long limbs, Marfan syndrome may cause other skeletal problems as well, such as scoliosis (curvature of the spine) and chest wall abnormalities (the chest bone may either curve in or protrude out, giving the chest a sunken-in or a pigeon-breasted appearance).

I do have a curved spine, but I put that down more to poor poor posture, and my chest most definately (and most embarrassingly) curves in. Which of course prompts my mum to tell me that pirates love me because I have a "sunken chest". Har. Har, mother.

Of course, if I did have this then it seems my symptoms are super mild compared to what they "could" be. I'm not actually convinced I do have it, it is just the syndrome that seems the most likely candidate for what my doctor was talking about.

I shall keep looking!

Don't worry everyone, we'll get to the bottom of this!

Kids Health ...

Wikipedia ...

In my medical career I've seen numerous case of lower aortic dissection. Or a bulge in the innertube of tall and skinny people. Please due get all tests necessary. Peace and love, get well.

Had you not already stated it I was about to point you to Marfan's. Do take this seriously.

It usually runs in families and the taller members of your ancestors usually haven't lived as long as the ones who do not manifest the disease. However, I believe this has to do with a high degree of likelyhood that an aortic aneurysm is involved. This can now be corrected if caught. You should be screened for it's formation frequently, so that if and when it appears it is corrected.

Do more research!

[edit on 4/23/2008 by Relentless]

P.S. If your Dr. did not know the name of this syndrome, you better find one that knows it.

[edit on 4/23/2008 by Relentless]

reply to post by Relentless


I am making lots of jokes about it but I assure you I do take my health seriously. The joking is a way of dealing with things I think, the more serious, the more I try and make light of it.

I'm scheduled in for the ECG and chest x-ray so hopefully I'll know by Wednesday next week or soon after if there is anything to really be concerned about

I will definately keep up the research! And I'm sure my doctor definately knows the name of the syndrome but she just didn't mention that detail to me, which is why I took it upon myself to start this thread and try and work out what I could.

Thanks for your input guys!

Most understandable TS. Humor has a way to diffuse serious matters. We just want to see you well.

hi, don't know much about marfans syndrome. But from your Avatar you do appear to have a really bad growth on your side. This is a condition i suffer from too.they are most commonly black and they appear anywere spread out like a star or some other design. I hope yours is not to serious. I have done some research.....like me,it looks like you might have tatooius morerosis. becareful, as soon as one of these manifest on your body you may feel a desire for more to break out on other parts of your body.

Originally posted by jpm1602
Most understandable TS. Humor has a way to diffuse serious matters. We just want to see you well.

Thank you very much for your concern It makes me happy how strangers can care for other strangers.

Originally posted by atlasastro
hi, don't know much about marfans syndrome. But from your Avatar you do appear to have a really bad growth on your side. This is a condition i suffer from too.they are most commonly black and they appear anywere spread out like a star or some other design. I hope yours is not to serious. I have done some research.....like me,it looks like you might have tatooius morerosis. becareful, as soon as one of these manifest on your body you may feel a desire for more to break out on other parts of your body.

hahaha, oh my, how did the doctor miss that?! The specimen on my side is actually the 2nd such growth I have found on my body. I have a slightly smaller and much more colourful one of my chest. I guess that one is infected?

Is there are cure?? I certainly hope not.

I definately plan on getting more of these growths in the future!

I don't know if this helps, but a couple of years ago I was diagnosed with RBBB.

Apparently it had something to do with systolic dysfunction, but the ejection fraction was reasonable at 46% and this is variable, with the EF going up above 50%.

I don't have any problems because of it though - no breathlessness, no chest pains etc

But it's definitely worth getting it checked and keeping on top of it, as is anything to do with heart/respiratory "problems"

Haha, i am a couple ahead of you.....don't worry, you'll survive. But damn the needles hurt....not to mention the "specialist" charge rate$. Damn worth it though.

Results!!

My chest x-ray was clear but the ECG was not so clear. I have an abonormal Aotic Valve, apparently. It's meant to have 3 flappy bits but it only has 2, so it doesn't close fast enough when blood moves through it and some goes back. This is apparently called "Regurgitation".

I have to go and have a more thorough ECG (apparently with this one I have to swallow a small camera or something! rockin.) to see just how serious it is, but apparently this isn't what would be causing the chest pains and is just an incidental find.

Also, I don't have marfans syndrome

The next tests have to be done by specialists so I won't be able to have them for 3 - 4 weeks, so I'll give you further updates then. I know you must be on the edge of your seats

[edit on 5-5-2008 by Toy_soldier]

God I love the edit button.

I wasn't trying to scare you, just add a little humor to the conversation.

Sorry you took it wrong.

Love and light my friend,

wupy

[edit on 5-5-2008 by mrwupy]

Why would you even say that to me?

I don't think there was any reason to scare a young man like that. What have I gained from your reply other than the desire to end it all now before that happens??

Shame on you.

He was being facetious TS. Blow it off. Glad you found the medical answer to your problem. Endoscopic surgery has made huge gains for valve related problems. Best of luck my friend.

If it ends up not being heart related, I would look to your lungs. Does it hurt when you breath in?? Due to your build that you described (tall and skinny), you could have what are known as "blebs" on your lungs that are causing pleurisy type pains (normally really sharp stabbing pains). If it is blebs, that could eventually (or maybe never, depending on your luck) lead to a pneumothorax (collapsed lung).

They can do a chest scan to see if blebs are present...

I had severe but short chest pains/cramps for about 5 years. The doctors dismissed it for awhile but I finally got the xrays, the radioactive blood thing (ECG?) and the fitness test with all the things hooked up to my chest and such. The doctor told me to take daily asprin but they couldn't find anything wrong. It's been about three years since they stopped seemingly on their own. In hindsight I can see that simple heartburn and anxiety led me into a self perpetuating cycle of worry and pain.

I take antacids or pepsid as my conditions warrant, which isn't very often anymore. It's stupid but it's my story. Maybe I can save a life over the millenia this post may exist in the databanks.

edit:

Great, now I think I have blebs because that was how it felt sometimes.

[edit on 5/5/08 by stikkinikki]

lol, mate, I totally knew you were kidding, my response was a joke also.

Sorry, I should have made my sarcasm more obvious by adding a few 's

Really, I was just trying to return your humorous comment with my own. Chuck her back up mate, it was a good one

Originally posted by jpm1602
He was being facetious TS. Blow it off. Glad you found the medical answer to your problem. Endoscopic surgery has made huge gains for valve related problems. Best of luck my friend.

Thanks a lot I'll be getting more info about it in due course so I'll get a better picture of whether or not surgery would be required. Cheers for keeping up with the whole thing jpm

Originally posted by philosopherrose
If it ends up not being heart related, I would look to your lungs. Does it hurt when you breath in?? Due to your build that you described (tall and skinny), you could have what are known as "blebs" on your lungs that are causing pleurisy type pains (normally really sharp stabbing pains). If it is blebs, that could eventually (or maybe never, depending on your luck) lead to a pneumothorax (collapsed lung).

They can do a chest scan to see if blebs are present...

Hmmm, I've never heard of those. Thanks for the information. I don't really have any pain when I breathe in, unless I've just done a vigerous work out. My up and coming ECG is meant to be a lot more thorough than the one I had last week, so perhaps these Blebs, if there are any, will show up on this scan. Let's hope not though

Originally posted by philosopherrose
I had severe but short chest pains/cramps for about 5 years. The doctors dismissed it for awhile but I finally got the xrays, the radioactive blood thing (ECG?) and the fitness test with all the things hooked up to my chest and such. The doctor told me to take daily asprin but they couldn't find anything wrong. It's been about three years since they stopped seemingly on their own. In hindsight I can see that simple heartburn and anxiety led me into a self perpetuating cycle of worry and pain.

I take antacids or pepsid as my conditions warrant, which isn't very often anymore. It's stupid but it's my story. Maybe I can save a life over the millenia this post may exist in the databanks.

I'm glad yours have stopped! Maybe mine will stop in time on their own also. I know it most definately isn't heartburn though. I've had that before and it goes away pretty quickly and feels completely different to the pains that are occuring now.

When I first told my dad about the pains he said, "Well men commonly ignore their ailments as soon as the pain stops and don't get them checked out soon enough, and the problem gets worse, so make sure you get this looked at if it keeps going". That was about a year ago. I sort of did exactly what he said not to do. I have a baaaaad problem with that.

Good luck saving those lives stikkinikki