Sorry---but what is DE? My son has had 2 abdominal surgeries. The first was for an inguinal hernia. The second was from Mysenteric Lymph Adenitis (not sure if...
Hi.. my name is Mandy and i'm new to this group... I have a son Ben who is nearly 15 years old and already about 6'3" tall.. It had been mentioned to me...
Let him have an echo and let us know the results. I would also draw a blood test for his copper minerals in his body this might be telling. I also have a 15 yr...
HI MANDY, MY SON IS ALMOST 11 AND HAS MARFAN AS WELL AS MAJOR SYMPTOMS OF LOEYS-DIETZ. DNA SAID MARF HOWEVER. HE WAS DIAGNOSED IN 2005 AFTER FALLING OUT AT...
He is 6 foot three inches and not sure of his weight for very very slim, skinny hands, wrists and ankles etc. Thank you for your response and will let you...
I just wanted to mention that my son had to go to cardio, eye specialist and genetacist before he could be diagnoses. I hope it goes easier for you and your GP...
You need to get an echo + measure his aortic root. There are things that you can do to reverse some situations and time is important. Try Mafan Life Forum and...
Thank you Larie.... I will go to the site you mentioned and i really appreciate everyone advice and comments. I am trying to remember that if this is Marfans...
Hi Mandy, Like everyone has said here, if your GP doesn't have a lot of experience with Marfan Syndrome, get to a cardiologist who has. So many regular drs....
Dural Ectasia Tammy Ranft <tammyranft@...> wrote: Sorry---but what is DE? My son has had 2 abdominal surgeries. The first was for an inguinal hernia. The...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan chat time Friday May 2, 2008 8:00 pm -...
marfans_support_and_c...
May 2, 2008 11:57 am
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Mandy, I think someone mentioned this before, but it's worth repeating - Marfans can be very different for different people. I've been living with it since I...
Thank you. What exactly is it though? I guess I should know, but I have no clue. Tammy Suzie Glassey <soozeege@...> wrote: Dural Ectasia Tammy Ranft...
Here is a pretty good description of DE: The central nervous system—the brain and the spinal cord—are surrounded by fluid contained by a membrane called...
Mandy, I have two teenage daughters with Loeys Dietz Syndrome.? We thought for several years that they had Marfan's.? It was through my own research and...
Thanks. That explains a lot, and now has me questioning things from my own past medical history. Now I have a lot more research to do. It will be worth it...
Jon's explanation was great. Just to add a little, it's estimated that over 60% of marfan patients have DE, known or not. It has also become a major symptom...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan chat time Friday May 2, 2008 8:00 pm -...
marfans_support_and_c...
May 2, 2008 11:25 pm
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Just read about Marfans Syndrome on the net. I have many of these characteristics or symptoms: scoliosis (I dont know if its more than 20 percent) long legs...
P.S. Sorry for the typos in my post! I should have mentioned that my seizure disorder is due to suspected epilepsy. My tailbone (I'm sorry but I do not know...
Sorry for so many postings...My epilepsy diagnosis, involved tongue- biting, involuntary shaking of the arms, and incontinence (bed- wetting.) Some of you have...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan Chat Time Sunday May 4, 2008 8:00 pm -...
marfans_support_and_c...
May 4, 2008 11:58 am
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Measure your wingspan.? Stand up against a wall.? Extend your arms up against the wall at shoulder length.? Have someone mark where the longest finger is on...
I was at seven I had Marfans. There are seven major tell tail signs of it. If you measure yours arms outstrecthed from finger tip to finger tip and it is...
Oooooooh! Marfans is such a tricky thing to diagnose. First of all, there are tell tale signs that almost everyone with it has, ALMOST everyone. Then there are...
Just wanted to mention that my father in law has a wing span longer than his hight, and he is 6ft5in, has very long legs,and does not have mfs or any other...
It is where your lens is strecthed mine is done in my cheek bone and up in to my forehead they say there is vision in my eye but I can't use it and I can't get...
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