muscular dystrophy please help - Muscular Dystrophy Message Board

tmm35 · 01-07-2003, 08:06 AM

i have a seven year old son who may have a form of md they are thinking duschenes is there any one out there whos child has md can tell me some of the symptoms .my son has weekness in the trunk and right side if his body he has bowel accidents and sometimes blader .he has a foot drop and has a hard time sitting up for long periods of time and complians of his legs hurting a lot.can any one please help me .tmm35

01-25-2003, 02:53 PM

Hi,

I just read you post and thought I would try and help you out. As you read my other reply to a lady, you most probably have seen about the guy I'm with. I asked Mark what symptoms he had when he first got diagnosed with DMD, he walked pidgeon chested ( chest right out ), walked on his toes which is the main sign of MD, he crawled everywhere, he stumbled a lot, his calves went hard and bigger, does any of these signs sound familiar? Mark is the eldest male with Dechenne Muscular Dystrophy in Britain, he has a Nippy 1 which is a ventilator for which helps him to breathe while he sleeps, without this he would have died like all of his friends from being a child, if your son does have DMD, please, please make sure he has one of these machines because I'm sorry but he would surely not make it to the late teens, Mark was meant to die at 16 and now he'll be 32 in August, we even had a baby boy that nobody thought we could have together, we were in magsazines, on the news and in newspapers so if Mark can be a fighter so can your son and yourself, if there is anything you would like to ask Mark or me, feel free to post any questions, best of luck. xx

tmm35 · 01-28-2003, 11:25 AM

hi melissa or mark.yes all those symptoms sound familar my son walks on his toes and yes his chest has started sticking out alot and he stumbles and falls alot and his calf muscles are very tight.yes you just about hit the nail on the head ask mark if his legs and stuff hurt to.my son goes back to the dr feb11 to have a muscle biopsy scheduled and some other test ask mark what kinds of test did he have.i know its all scary but we have accepted that its a 95 percent chance thats what he has .any additional info would be helpful.thank you so much tmm 35

01-28-2003, 12:29 PM

Hi,

I read your post, I've asked Mark your questions and here are the answers....

First of all, Mark's legs did hurt, especailly after walking, his hips hurt, he also got tired very quickly.

Mark's condition was confirmed at the age of five by having a muscle biopsy, I am talking 27 years ago so tests have progressed and they're a lot quicker and more accurate, Mark has a nasty scar from his biopsy on his leg, your son will not suffer the same way. This is the only test he had and lots of physio which didn't work.

Mark said check out all the DMD web sites, they have some really good information on there, Mark also said that when I mentioned about your son getting a Nippy ventilator, he said that your son is too young for one and will need that in the future, if you let us know what happens on the 11th, we might be able to help you further. I can't give you our e-mail address or it will be edited by the moderators on here but Mark said that everything you have said points to Muscular Dystrophy. I'm so sorry if that's the case and so is Mark. Best Of Luck

xx

tmm35 · 02-10-2003, 02:28 PM

hi guys tim goes back to the dr tommorrow and i had a talk with his dr and he feels the same way tims orthepedic dr does tims posture has also weekened alot and that scares me also wish us luck and pray for him and yes i have checked out every md website and read all about duschenes and yes tim has all the symptoms.is loss of bowel control one of the symptoms to .tims calfs are getting very hard and he complains so much .and i wish you 2 the best of luck. thank you tmm 35