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Acerbitas · 11-01-2007, 12:39 PM

Hello...I'm a 20 year old female who has been recently contemplating that I might have Marfan Syndrome. I am scheduled to see a doctor soon, but I was wondering if anybody could help me determine my odds? Thank you very much!

Symptoms -
- 5' 11"
- long fingers, and very long, thin feet with long toes
- long face, semi-high palate
- long limbs, my arm span seem to be about three inches longer than my height
- both types of scoliosis, with some back pain
- stooped shoulders
- my joints are very flexible but I can't reach my toes
- very nearsighted
- heart palpitations
- acid reflex and heart burn
- swollen foot

I do not have flat feet, and my eyes have never had dislocations. I am very skinny in my arms, legs and certain parts of my body, but my hips are wide and my stomach sticks out. I am finding it very hard to walk lately, both of my feet and parts of my legs are in pain, and I have knock-knees. My fingertips are tingling. Anybody know what to make of this? Thanks very much!

growly · 12-18-2007, 07:32 AM

That sounds like it could be marfan's. I don't think marfan's causes heartburn, though.

Unfortunately, it's not a matter of chance--either you have it or you don't. The most important thing is to have an echocardiogram and make sure you aren't developing an aortic aneurysm. And heart palpitations could be a sign of mitral valve prolapse or other abnormalities.

The good news is, marfan's is a treatable disorder.
Good luck!

moderator2 · 12-18-2007, 04:48 PM

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CheerAngel · 01-20-2008, 12:49 AM

Hi Acerbitas, you do have symptoms of Marfans but this is a disorder that doesn't have a specific blood test or test to be done and you can know you have it or not. An experienced doctor specialising in Marfans will be able to help diagnose you. Even those doctors that have heard of marfans but are not experience or specialised in that field will not make a correct diagnosis.

I was first told I have marfans by this doctor that monitors my scoliosis. Then I was sent to cardiac clinic to have my ecg monitored. A year later, I was asked to go to have an ECHO, everything was good. No aortic enlargement. Then since my heart is okay, they discharged me and say that I do not have MFS. Although I have mafanoid habitus(tall, thin, long limbs...)

The most serious problems with MFS is the heart and blood vessels dilating leading to dissection or rupture. So that needs regular monitoring to check for the increase in size of the aorta. Some need medication like beta-blockers to reduce the heart rate so the aorta will not have lots of stress or pressure.

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