Joined: 02 Nov 2005 Posts: 2 Location: Baton Rouge, La
Marfan Syndrome? Posted: 11-02-05 03:21am
I was diagnosed with marfan syndrome when
I was 13. I have myopia, scoliosis, rmvp,
hypertention, hypermobile joints, pectus
carrinautim, reumatoid arthritis...
Etc... My question is... I'm now 28 and
i'm quetioning my diagnosis. I know I
have everything, but I have never really
been extremely tall, i'm 5'11"... I've
always been skinny, but since college I
have gained wight, I am now very much
overwight and trying to get that under
control. Is it possible to have marfan
and not be skinny and not be really tall?
Also, I don't have extremely long arms and
fingers, they are pretty proportionate to
my body... Only other thing I can think
of is that I do have joint and bone
problems and I have a maliofacial deformiy
(strangly pionty ears, I make a good elf
or Dr. Spock for holloween w/o effort on
the ears :-)) I have always been under the
impression that I had it... From my dr's,
but my current Dr. (w/o a detailed look)
thinks I don't have marfan syndrome b/c
i'm not skinny and tall.. In her words,
"she thinks I could be a carrier and only
have some traits"? I didn't think there
was a such thing, either you have it or
you don't. I'm checked annually for
aotric and mvp issues, size increase
etc... Only minimal incrase since age
13... About double, but still within good
rage (at 13 the dr's said I had a very
small heart, like 1/2 normal size, and it
could be to my advantage b/c of marfan) I
guess, should I push the issue with my Dr.
And be tested again, or should I find
another Dr. Etc...?
Also, fyi, my grandmother died of an
enlarged heart and had hypermoble joints
and my uncle, her son, was supposedly
found to have marfan syndrom after he died
in a car accident... To my knowledge my
dad didn't really have any sypmtoms...
And that side of the family was always
short and dunky, except for my and two of
my uncles? Strange.
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This page was last updated on June 11, 2008
