Is echo a good place to start?

[burntbees]

Hello everyone, I am new here, I just posted in the general discussion, stating the details of my history, and my symptoms.

Basically my primary care physician says this:

"marfans syndrome (mfs) is a genetic syndrome that starts in childhood. if you had a normal echocardiogram 4 years ago, then it does not seem probable, or maybe even possible, that you could have a problem with your aorta now. "

I obviously do not agree with his professional opinion and am wondering where to go from here. I am only on my insurance for two more weeks, so I have to decide which testing would be the best, and if the results warrant further investigation then I will have to choose whether to pay for new insurance. The echo cardiogram I had 4 years ago was not for suspected marfan's. It was due to my anxieties related trying to figure out what was wrong with me. I am reading here that an echo is not the only test to be done for heart involvement, but it seems it is a good place to start, especially since I have one from four years ago to compare...

I am also reading that it is not a good idea to get an official dx for marfan's? So does that mean I should not see a geneticist/cardiologist and just have my pcp order my echo for suspected marfan's.

And lastly, If the echo, compared with the results from 4 years ago, seem normal for my age (23), where do I go from there?

I am totally freaked out right now, I guess that is needless to say. Everyone, including my doctor, believes I am a hypochondriac.

Please read my other post under general discussion, titled "suspecting marfan's, please help" if you want to know more about my history.

Thanks for your help, it is truly valued.

[npp33]

It is true that you should get a CT or MRI of the entire aorta periodically, but with Marfan, most aortic problems are restricted to the aortic root. An echo is the cheapest and quickest way to visualize the aortic root. If you can get an echo scheduled before your insurance expires, perhaps on an urgent basis, then you might not have to pay much. Regardless, you do need some imaging as a follow up, given your characteristics. Your primary care doc obviously does not know much about Marfan, given his statement. People with Marfan can have "normal" aortas well into their 20s before any problems start appearing. As I stated before, a single echo is merely a "snapshot" in time and does not tell you much about what the aorta is doing OVER TIME.

So, I repeat: get an echo, since it is the cheapest way to do it. Compare to the one from 4 years ago for change. You can discuss your concerns with a cardiologist but in my personal opinion you should refrain from getting an official "Marfan" diagnosis because it does not help you much clinically (either you have aortic problems or you don't; a Marfan diagnosis doesn't change that) and because it'll potentially wreck your chances to get more insurance later.