Marfan Syndrome Support Group
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. This may produce shortness of breath, an irregular pulse, and undue...
Hello everyone,
This is my first time using a site like this so hopefully good results will come from it.
I am a 22-year old male from Michigan who is pursuing a bachelors degree in mechanical engineering. I was diagnosed with idiopathic scoliosis at age 12 and have been treating it with irregular chiropractor visits ever since. Besides for scoliosis, I have almost no medical problems or allergies and consider myself healthy-minded. I exercise at least 30 minutes every week on top of walking every day for at least an hour.
At age 14 I was kicked in the heart-area of the ribs while playing soccer and ever since then I have noticed rare sharp strains in that area (right on top of my heart). I have had one or two instances of low blood sugar in the past but that was quickly corrected by eating. About once or twice a year, I get sharp and sudden heart palpitations that go away after about 10 seconds.
Today I was taking pictures while on vacation in Germany (not doing anything particularly stressful) and my left upper back in between spine and scapula seized with severe pain. Along with this pain came moderate heart pain and an inability to take full breaths of air without feeling pain in the heart and lungs. After laying down for an hour and taking some Aleve, I noticed my heart making audible murmurs ONLY when I lay on my back flat (not at angles). The pain went away until I woke up to eat, only to slowly and gradually feel heart strain again. I took my blood pressure after dinner and noticed my diastolic was about 103 which means stage 2 hypertension although I know that regular heart monitoring is more accurate than instantaneous results.
After researching a little, I believe the cause to be Marfans syndrome although I will not be able to get a diagnosis until May 25th in the states. My father said that the plane ride (9 hours) here is probably the accelerator of my symptoms. Unfortunately I can't see a doctor in Germany so I will have to fly home with this *condition*.
From Marfan.org, I have these body features-which may or may not classify me as having Marfans Syndrome:
Long arms and legs
Tall and thin body type
Curvature of the spine (scoliosis or kyphosis)
Chest sinks in (pectus excavatum) or sticks out/pigeon breast (pectus carinatum)
MVP? (heart palpitations)
I researched into other diseases that may cause my pain but could not find anything as close to my problems as these. If anyone has any advice, recommendations, warnings, help, comfort, or anything I will be more than receptive to hear it.
Hopefully the final diagnosis will be of a less-serious nature
Thanks Everyone,
Ryan Tietz
This is my first time using a site like this so hopefully good results will come from it.
I am a 22-year old male from Michigan who is pursuing a bachelors degree in mechanical engineering. I was diagnosed with idiopathic scoliosis at age 12 and have been treating it with irregular chiropractor visits ever since. Besides for scoliosis, I have almost no medical problems or allergies and consider myself healthy-minded. I exercise at least 30 minutes every week on top of walking every day for at least an hour.
At age 14 I was kicked in the heart-area of the ribs while playing soccer and ever since then I have noticed rare sharp strains in that area (right on top of my heart). I have had one or two instances of low blood sugar in the past but that was quickly corrected by eating. About once or twice a year, I get sharp and sudden heart palpitations that go away after about 10 seconds.
Today I was taking pictures while on vacation in Germany (not doing anything particularly stressful) and my left upper back in between spine and scapula seized with severe pain. Along with this pain came moderate heart pain and an inability to take full breaths of air without feeling pain in the heart and lungs. After laying down for an hour and taking some Aleve, I noticed my heart making audible murmurs ONLY when I lay on my back flat (not at angles). The pain went away until I woke up to eat, only to slowly and gradually feel heart strain again. I took my blood pressure after dinner and noticed my diastolic was about 103 which means stage 2 hypertension although I know that regular heart monitoring is more accurate than instantaneous results.
After researching a little, I believe the cause to be Marfans syndrome although I will not be able to get a diagnosis until May 25th in the states. My father said that the plane ride (9 hours) here is probably the accelerator of my symptoms. Unfortunately I can't see a doctor in Germany so I will have to fly home with this *condition*.
From Marfan.org, I have these body features-which may or may not classify me as having Marfans Syndrome:
Long arms and legs
Tall and thin body type
Curvature of the spine (scoliosis or kyphosis)
Chest sinks in (pectus excavatum) or sticks out/pigeon breast (pectus carinatum)
MVP? (heart palpitations)
I researched into other diseases that may cause my pain but could not find anything as close to my problems as these. If anyone has any advice, recommendations, warnings, help, comfort, or anything I will be more than receptive to hear it.
Hopefully the final diagnosis will be of a less-serious nature
Thanks Everyone,
Ryan Tietz
Did you ever get your answer? Usually you have to see a Geneticist to diagnose the Marfan's. However with your symptoms hopefully by now you have seen a Cardiologist.
Best of Luck.
Dana