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joscketSeper's avatar

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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17 Answers

dpworkin's avatar

Get off of Fluther and make an appointment with a psychotherapist. You are not a well man, and no one here can help you.

janbb's avatar

Or a doctor, even if you don’t have insurance.

Seek's avatar

Only a doctor can help you. I suggest you avail yourself of some insurance before you’re diagnosed with the condition.

iam2smart99037's avatar

How would a psychotherapist help a nervous system/cardiovascular disorder?

gailcalled's avatar

Classic symptoms usually fit no one. They are a statistical norm. You’ve already had at least five doctors indicate a possible diagnosis. Why not find ways to live, tricks to help and forums to share info with?

Here’s some useful info. http://www.medicinenet.com/marfan_syndrome/page3.htm

It has been alleged that A Lincoln had Marfan’s. http://rarediseases.about.com/cs/marfansyndrome/a/092402.htm

dpworkin's avatar

@iam2smart99037 This OP has made a series of posts on this forum, each one with a different physical complaint ranging from impotence (due to tight underwear) through, now, Marfan’s syndrome. It is not for the Marfan’s that I suggest psychiatric help.

pathfinder's avatar

That is sat.

janbb's avatar

@dpworkin I think the impotence was due to an injury sustained during ejaculation, actually. Correct me if I’m wrong.

dpworkin's avatar

Well, both, if you go read the post, which I believe was entirely as facticious as this one. This an attention-seeking person who lies easily, and needs some assistance.

janbb's avatar

No disagreement there.

gailcalled's avatar

At least it brought pathfinder out of hibernation. His English is improving at the speed of light.

janbb's avatar

That is a plus. I’ve been missing him.

@gailcalled @dpworkin Did I miss the memo this afternoon?

iam2smart99037's avatar

@dpworkin – Ah. Now I see.

Yeah, psychotherapist is the way to go.

nebule's avatar

all I would say is listen to dp and jbb they know what they’re talking about xx

thriftymaid's avatar

You can get a yes or no to this question by going to the doctor. You said you had already done that, so why the discussion here?

YARNLADY's avatar

My oldest grandson has a diagnosis of ‘possible’ Marfan as well. Apparently the test for it is not worth the trouble, so they simply treat the apparent symptoms. No one on the internet can help you, so keep in communication with your doctor, and follow his instructions. If you have any questions at all, talk it over with your doctor, since that is the only way you are going to find out the facts that apply to your own condition.

crankywithakeyboard's avatar

Go get a karyotype done and talk to a genetic counselor. It should be easy to find out.

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