Living With Marfans Syndrome....

Gday all, im located in australia, i was diagnosed with Marfans Syndrome at the age of 22, I didnt listen to my Local GP back then, as i felt invisible, i am now 32 and suffering for this foolish mistake, i used to work in a Timber Mill, Stacking timer 8 hrs a days, 5 days a week, all sizes.
I am 6ft 7 , slim, pidgeon chested, scolliosis, and every day i am in pain, i have seen a GP about this and has him confused, as in why i have the pains, he doesnt take it serious enough i think, i do have 2 ask a question and i do hope someone can help me out with, My question is , does any suffer pains in aortic area 24/7 and some days just doing nothin like sittin on couch, the pain get sharper, i would like to hear from you, my family are been supportive as they can, though they seem to think a tablet will fix everything, when i was diagnosed with the Syndrome, i was one BETA Blockers, went back and seen me GP back then, n told me to stop taking them, so atm, i am on no medication, and i am worried.
My blood pressure is high and me GP i see, hasnt even put me on blood pressure tablets to help beat this , i would like to find other aussies who have this syndrome to talk to about it and share my story , there is so much more i could type, but been new here, im not sure if this site gets used anymore, im hoping someone can help me, i am now 32 and livin with Marfans Syndrome, isnt easy and i struggle daily to make it thru the day without feeling lousy and worthless.

Thanks For Reading, Hope someone or some people on here can help me out.
auzzieguy32 auzzieguy32
31-35, M
2 Responses Oct 21, 2012

From what I was told an ECG will not show a thoracic anyurism. You need an echocardiogram. That is how they can see if there are problems or if there will be problems. My GP suspected Marfan in my daughter and she got an immediate appointment with a cardiologist as this is very important. She also has a geneticist, orthopedic specialist, and pediatric ophthalmologist.
Google National Marfan Foundation and get gold of them. They can tell you what doctors to see in your area and the can address any concerns you have. Your GP does not know about Marfan and is not looking out for your best interests. You need to see specialists....your life may depend on it!
I got so much information from National Marfan Foundation, they are a good place to start.

Hi, have you seen a cardiologist? You really need to see more than a GP....most of them do not know much, if anything at all, about Marfan Syndrome. Have your GP refer you to a cardiologist and get an echo cardiogram. From there they can tell the size of your aortic root. Please do this asap, as it could save your life.
I wish you all the best and you just need to be in the right care!

Hi, my gp last time i seen him said no need for cardiologist and as they r docs we all do what they say, but maybe ur right , maybe i need scrap the docs, and go to cardiologist and go from i guess, i recently had an ECG but doc said it was nothing to worry about... i dunno what to do........ im at the end of me road ,