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I have a few Marfan's Syndrome symptoms, Can i really have it even if not classic?

Asked by joscketSeper (323points) March 27th, 2010

Hi. I’m early 30’s but from pictures from childhood etc I’m the one that stands out the most. Me and my younger sister. I have super skinny and long limbs.

I also have scoliosis, i went to the doctor too and he noticed i have some eye cross in one of the eyes. And i’ve been having serious chest pains since i was 13 years old.

No i don’t have double jointed fingers. in fact my fingers are worse than normal. Like i can’t bend my big toes at all. They dont bend. Usually some marfan people have super flexible fingers, but not me.

But i seem to also get damage easily. LIke now, a few weeks ago my ankle started to come out of place when i walk or use my ankle It hurts really bad. where did that come from ? i didn’t even get injured.
ANd my ribs keep hurting me realy bad.

I dont have insurace so I can’t get checked.
My Family doctor does think i may have marfans. And my orthopedic also thought that, and some other orthopedic also, just by seeing me suspects i have it. Then another orthopedic doc i saw some years ago, also saw me and suspected it.

Again, i dont have all the classic symptoms, but i do have some.
So, what to do? Since some years ago i also noticed that when i do hard exercise( light running)..like running without stopping for a while. my chest starts to hurt alot. so i have to stop.

I can’t do much running nowadays because i have knee injuries and so i can only do it sometimes but I heard if you have marfan’s it’s dangerous to do strenous exercise.

any advice?

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