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Well I've had pneumonia for the past month and went back to the doctor today. Not coughing nearly has much but when I do cough, I am gasping for air and it feels like I have asthma(sp?).
Well he took another chest x-ray and he says my lungs are really big and elongated. He thinks it possibly could be marfan syndrome so he is recommending me to a lung doctor. It says this is a genetic disorder and I don't know anyone in my family that has it. Plus I've never had any respiratory problems or asthma so what the hell?
Does anyone have any experience with this syndrome?
I looked at that list earlier. I weigh 130lbs at 5'7 so I'm definitely not tall. Limbs are not abnormally long, I would say average for my body type. I really don't have any of those symptoms.
5' 7" is not short, but I think it's odd for a doctor to diagnose Marfans with limited information. It took 7 years for a doctor to figure out I have systemic lupus and seems like anytime someone may have a rare illness, it takes a longtime to know what it is. Surely it's considered rare.
5' 7" is not short, but I think it's odd for a doctor to diagnose Marfans with limited information. It took 7 years for a doctor to figure out I have systemic lupus and seems like anytime someone may have a rare illness, it takes a longtime to know what it is. Surely it's considered rare.
this ^^^ and no one famous has it so they are just guessing sometimes at what you have I have seen specialists after specialists and it was useless because they said there was a problem but they did not have a name for it so that equated in my medical records as they know there is a problem but have no name for it ...that is what it means to be stuck in a medical conundrum aka no name disease .
Thanks everyone. All I know is the doctor has got me scared now.
I was completely fine until I got pneumonia. Now I could possibly have marfan?
My mom had multiple illnesses and suffered a lot before she died two years ago, my dad now has lung cancer and is suffering. I honestly don't know how they kept their mental health intact with all they went through and been through. Damnit, I do not want to go through that. Life to me honestly, isn't worth living suffering.
Sorry for the vent, I just hope they can get me an appointment very soon because I can't have this on my mind for a month which they said could be a possibility. I'll find someone out of town if I have to.
Well it's a good thing he referred you to a pulmonologist (the lung doctor)! It was the right thing for him to do, since he obviously wasn't sure what to do about you and knew a specialist would be more appropriate. I don't know why he threw Marfan syndrome into the conversation, but you're the one who had the appointment with him. What did he say when you asked him to explain his reasoning?
Well it's a good thing he referred you to a pulmonologist (the lung doctor)! It was the right thing for him to do, since he obviously wasn't sure what to do about you and knew a specialist would be more appropriate. I don't know why he threw Marfan syndrome into the conversation, but you're the one who had the appointment with him. What did he say when you asked him to explain his reasoning?
His reasoning was because I have big lungs and they are elongated. All my vitals were fine. The only other symptom I have is poor vision which I had to start wearing glasses 6 years ago.
Completely healthy before I got pneumonia a month ago. Don't take any kind of medications.
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