worried i have Marfan's syndrome

[spacebunnyx]

I thought I'd kicked this anxiety to the kerb last year but its reared its ugly head again:lac:

A year ago an endocrinologist suggested I could have it as Ihave some of the signs, namely;

Im tall, 6ft and slim
I have a high arched palate
Mild scoliosis
High arches on my feet
I can do the wrist sign... Wrapping fingers around wrist
Short sighted

I had an echocardiogram which was normal. I paid for the echo privately as I was due to start fertility treatment within the week and didn't want to go in thinking there could be something life threateningly wrong with me.

Anyway, to cut a long story short, I never saw a specialist and just forgot about it... Now I'm thinking perhaps the Dr was on to something. Should I pursue this or let it drop? What would the reaonable thing be?

[hyper]

As far as I know ( and I am no expert ) the worst affects are problems with the heart which can be fixed by surgery. Your heart is fine so you don't have anything to worry about that way. If you did have Marfans you must only be mildly effected. I know a girl who has Marfans, she has had a valve replacement she is 28 and she is fine, she has a normal life expectancy and is fit as a flee.
Try not to worry but I know it's easier said than done x x

[cattia]

As above, marfans really isn't that bad. I spent a lot of time looking into this as there was speculation that my husband may have it. He had an incompetent aorta and had to have a valve replacement, but hes fine. His heart surgeon didn't believe he had it, but we have asked for a re-referal to be sure in case it turns out that either of our kids have it. I honesty worry like crazy about my kids but the possibility of them having marfans actually doesn't worry me that much as I know they would still be able to have a normal healthy life.

[spacebunnyx]

Thanks Hyper and Cattia for your responses. I know Marfan's is generally OK if you are diagnosed with it. If you have aorta/heart problems you can have surgery to correct it etc. My concern is that I haven't been diagnosed... I've had a doctor suggest I might have it, but it's never been investigated. If you have it you should have an echo every year as a minimum. Mine a year ago was "normal" but at the top end of what is normal.

I don't know if this is something I should just forget about or have checked again. My HA mind doesn't know what would be a reasonable thing to do!

xxx