Posted by DIANE SCHNEIDER (152.163.252.197) on September 12, 2003 at 09:45:39:
In Reply to: Re: Lymphadema posted by DIANE SCHNEIDER on September 12, 2003 at 08:55:19:
: : MY SON MICHAEL HAS HAD THIS SINCE HE WAS 1 MONTH OLD.JANUARY OF 1980. WE HAVE SEEN MANY DRS AND HAVE TRIED MANY DIFFERT THING TO HELP HIM FRON LEG MASSAGE,WRAPPING HIS LEGS AND THE LEG PUMPS.ALL HAVE HAD SOME SUCCESS.BUT A YEAR AGO MICHAEL GOT REALLY SICK AND WAS IN THE HOSPITAL FOR 3 WEEKS AND THEY GAVE HIM A WATER PILL CALLED FUROSEMIDE. MICHAEL TAKES 60 MG DAILY. THIS HAS MADE A GREAT DIFFERENCE. BIGGEST DRAW BACK MICHAEL HAS TO GO TO THE BATHROOM ALL THE TIME. THIS HAS BEEN THE ONLY THING THAT WORKED FOR HIM. HE LOST 60 LBS OF WATER WEIGHT IN 2 WEEKS.ALL I CAN SAY I SAW IT WORK.MICHAEL NOW HAS TO WEAR BODY STOCKING AND I HAVE TO TELL YOU THAT HAS BEEN VERY HARD ALSO.GUYS JUST DON'T WEAR PANTIHOSE.BUT HE TRIES VERY HARD TO GET PAST THEM. MICHAEL HAS HAD MANY LEG INFECTIONS THREW THE YEARS AND HE NOW HAS IT IN BOTH LEGS,PRIVATE AREA,CHEST AREA AND ON THE TOPS OF HIS HANDS. THIS ALSO COMES WITH SORES ON HIS LEGS AND TOES AND OTHER AREAS.THEY ALSO LEAK ALOT. THIS HAS BEEN A VERY HARD THING FOR MIKE TO HANDLE THREW THE YEARS. IT LEAVES HIM FEELING VERY INSECURE ABOUT HIMSELF AND BEING AROUND OTHERS.HE CANT DO MANY THING. HIS LEGS ARE VERY HEAVY AND WHEN TRYING TO DO SOME THING,(WITH THE WATER IN HIS CHEST), HE HAS ALOT OF TROUBLE BREATHING. I ALWAYS WANTED MIKE TO MEET AND TALK TO SOMEONE WHO HAD THIS AND COULD UNDERSTAND HOW HE FEELS AND WOULD START TO FEEL BETTER ABOUT HIMSELF THAT HE WAS NOT THE ONLY ONE OUT THERE WITH THIS.ANY ONE OUT THERE PLEASE WRITE IF YOU WOULD LIKE.IT WOULD BE GOOD FOR MICHAEL.
P.S.MICHAELS DAD GOT THIS WHEN HE WAS 17 AND IS NOW 43 AND MIKES SISTER HAS IT ALSO BUT NOWHERE AS SEVERE. E-MAIL US AT W1FRED2JO3@AOL.COM
: : : : : : Has anyone heard of lymphadema? A friend of mine has this and is having trouble finding treatment because it's so rare. Any suggestions??
: : : : : I am a physical therapist in PA. I am trained in treatment of Lymphadema. If you still need help, contact me and let me know the region you are in and i will try to help you locate a facility.
: : : : : Or, look up the national lymphadema network.
: : : Hi my name is sharon and i am 21 years old. i hve primery lymphdema since i was 9 years old.
: : : thisi snor so rare and i know more people who have this . there are ways to treat this