Hi there! I haven't been active here for a while, but I just have a few questions with respect to Marfan's. I would appreciate if a doctor specialized in similar syndromes could get back to me!
Almost 5 years ago I was diagnosed with "atypical" Marfan's (the exact words of the doctor). To this day, I am still wondering whether I have it or not.
What are my pointers:
-Long and thin fingers in hands and feet (However, I do not pass the wrist and thumb test), my hands just seem more delicate than others' hands.
-High arched palate.
I have no other issues related to the syndrome and there are no members in my family that would display the characteristic Marfan's look.
Based only on the above, I was diagnosed by a quite obnoxious professor of medicine at a University teaching hospital, who told me to check my aorta twice a year. Since then, I have been examined by two cardiologists (both say that my heart is in excellent condition and no signs of Marfan there) and two ophtalmologists, who did not find any issues related to Marfan's in my eyes either.
Now, my questions are:
1. Should I just let it go and decide that this is how my skeleton is built and it is not necessary to be related to Marfan's?
2. Should I maybe have some genetic testing?
Any insight into this would be appreciated.