Discussions By Condition: I cannot get a diagnosis.

Marfan syndrome?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: zCAKEz
  • September 4, 2009
  • 09:42 PM

Does this sound like marfan syndrome?
6 foot 2 15 years old 160-162 pounds.
Played football and plays basketball at the varsity level.
Has stretch marks on back butt and small one on the front of my thigh forget what thats called quads maybe?
I have arms 1-3 inches longer than my height.
i have a positive wrist sign but a negative thumb sign.
Most of my friends have a bigger hand than me and they are mostly shorter.
My middle finger is about 3 3/4 inches long.
I wear size 11 shoes which is pretty small for 6'2
Im not freakishly skinny and do have muscle definition.
my feet are not flat.
I do not have scoliosis as of last time i went to the doctor.
My shoulder blades stick out which makes it look like i have kyphosis/lordosis but i really dont i dont think.
I may have minor PE but i think its just mostly my pecs but if i measure where it indents its around 1 cm
My wrists are like 7-8 inches arond
i have negative thumb sign
No vision problems i am aware of but i think i had like 20/30 but i think i just messed up.
does this sound like marfan or am i just a hypochondriac

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8 Replies:

  • bump to the top
    Anonymous 42789 Replies
    • September 5, 2009
    • 03:58 AM
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  • bump for help
    zCAKEz 1 Replies
    • September 5, 2009
    • 09:05 PM
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  • Honey please see a doctor.... 1st and foremost because if you play sports and would have this disorder they have a high risk of heart defects due to the immense growth rate. Realize that if you are only 15 years old, boys to not reach their full growth potential until their college years. I have a man that i care for that has this disorder, one of my favorite people in the world and he is functioning fine and he's in his late 60's. Of course he has some medical issues but has had a wonderful quality of life... wife/kids etc. I must insist you see a doctor and voice your concerns... Anyone in your family very tall??? I'm more concerned for your heart. I now the gentle man has glasses but his eyesite is not as bad as another gentle man I cared for with this also. There are a lot of free clinic's if you and your family don't have insurance but you know your body better than anyone else. Better to be safe now and seek medical advice then to pay later!!! Good luck!
    Anonymous 42789 Replies
    • September 6, 2009
    • 01:31 PM
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  • My grandpa was 6'3 my moms 5'6 and my dads 5'11, i have a 6'0 aunt and 6'1 cousin. And I am just wondering if that sounds like it may be marfan syndrome or if im just being paranoid because everytime i see something online im like omg i have that and am worried about it until i see a doctor than turns out nothings wrong lawl
    Anonymous 42789 Replies
    • September 6, 2009
    • 10:58 PM
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  • anymore opinions
    Anonymous 42789 Replies
    • September 9, 2009
    • 08:45 PM
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  • Check out www.marfan.org Or the about marfan syndrome at http://www.marfan.org/marfan/2280/About-Marfan-SyndromeThe main concern with Marfan Syndrome is that it is a connective tissue disorder and many people who have this syndrome, especially those who don't know it, unexpectedly die from a tear in the heart muscle. They say Abraham Lincoln had it because of his features. He very well may have had a short life even if he hadn't been assassinated. Good Luck.
    gr8tful 175 Replies
    • September 10, 2009
    • 01:20 AM
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  • I agree with what other people said-if you suspect that you might have it, you should definitely make an appointment with a cardiologist and have your heart checked (with an ultrasound). The doctor will be able to determine whether there is a structural issue with your heart. That is the most important problem I would think-having Marfan's and doing sports might be a risky combination. I myself have only the skeletal characteristics of the Syndrome-long and thin fingers, high palate, narrow face. To be on the safe side, I have an ultrasound every six months. I think that the only way to be 100% sure whether you have it or not, is genetic testing.
    Anonymous 42789 Replies
    • September 17, 2009
    • 01:18 PM
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  • to determine whether there is a structural issue with your heart. MFS (Marfan syndrome) has nothing to do with the structure of the heart. The heart is muscle. Marfan syndrome is caused by a defect in connective tissue. The most dangerous aspect of MFS is a weak aorta; the aorta is connective tissue. A sonogram looks for enlargement of the aorta, (aortic aneurysm). With MFS that is most commonly found in the ascending aorta (the end which connects to the heart), but an aneurysm can be found anywhere along the length of the aorta, which runs almost to the groin. Connective tissue is found throughout the body. There is no simple, definitive test for MFS. Diagnosis is made by a collection of observations and tests, called "diagnostic criteria". That is why it is important to seek out a doctor very familiar with Marfan. The slit lamp test (simple, painless close look into the eyes, looking for dislocated lenses which can occur in MFS) is another important tool in diagnosis, but must be combined with all other diagnostic criteria. Genetic testing is costly and complicated, and is not available to simply tell you yes or no. The relationship to the heart - if the aorta is compromised it puts stress on the heart. An enlarged ascending aorta can cause the aortic valve of the heart to not close properly, which also compromises the heart. The heart is muscle, not connective tissue, so technically is not directly affected by Marfan.
    Anonymous 42789 Replies
    • September 17, 2009
    • 08:52 PM
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