January 6, 2011 at 11:52 am #73420Younger MD sufferes, advice and a friendly chat!!!
I’m 14 and i have Minicore Myopathy. I was dyagnosed when i was 8 and i don’t know any one with the same straign as me and i only know one other child with MD
I’d love to hear from anybody wheather your a parent or if your a young sufferer!
lauraxxxJanuary 6, 2011 at 12:35 pm #78458Re: Younger MD sufferes, advice and a friendly chat!!!
Welcome to the site. Feel free at anytime to post here. Other people will be pleased
to advise or try and help you. Most of all they will understand.
Yours is one of the more unusual variants. As such there will always be some confusion.
Here is the page on the main MDC site :-
This makes clear that that in a lot of the cases your condition is very variable and
often stabilises rather than progresses. There is an incrbible amount of research being
done so with your young age this is very good news indeed.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010January 6, 2011 at 12:51 pm #78459Re: Younger MD sufferes, advice and a friendly chat!!!
In fact rather than saying “often stabilises”,
more correct is :-
The terminology is that is “usually static”.
or that “progression stabilses in most cases after adolescence”.
This is again more encouraging.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010January 6, 2011 at 1:09 pm #78457Re: Younger MD sufferes, advice and a friendly chat!!!
glad you found us. Hope you enjoy the forum and ask/chat away
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015January 7, 2011 at 1:10 pm #78461Re: Younger MD sufferes, advice and a friendly chat!!!
thanks i just thought that if there was any body newly diagnosed or younger than me or just going onto a bi-pap machine then its always nice to have someone else to chat to about it.
lauraxxJanuary 9, 2011 at 8:25 pm #78468Re: Younger MD sufferes, advice and a friendly chat!!!
Welcome to the forum. I’m Mark 23 (not an adolescent anymore but like to think of myself as young lol) and it may interest you to learn I also have “minicore myopathy”. Any questions specific to the condition please don’t hesitate to ask. I know it can be somewhat daunting having minicore myopathy such a rare strain of MD. Like you I seldom get the opportunity to converse with anyone with MD yet alone the same condition as myself (tell a lie I have a Canadian pen pal, who has minicore myopathy), but this forum has proven to be enlightening, not to mention a great place for support and a place to vent.
All the best,
MarkJanuary 10, 2011 at 2:23 pm #78463Re: Younger MD sufferes, advice and a friendly chat!!!
No worries. A preliminary diagnosis was made when I was two years of age and later confirmed by a muscle biopsy. I currently have a geneticist somewhat befuddled as he cannot determine how I came to have this form of MD as all the genetic tests are coming back negative or inconclusive. I’m guessing in my case it was a random mutation and consequently I’m the first of my line to have it, but I’m still waiting on more test results. However, I do definitely have a congenital case of minicore myopathy a.ka multicore myopathy or multi-minicore myopathy.
Once again, if there’s anything you’d like to know from someone who has probably been there please don’t hesitate to ask. Obviously if I cannot help no doubt someone else on here will have the answer.
In one of your posts you mentioned Bi-Pap machine are you on a Bi-pap or….?January 10, 2011 at 5:51 pm #78464Re: Younger MD sufferes, advice and a friendly chat!!!
when i was in year 3 aged about 7 i was preparing for my first ballet exam, my ballet teacher noticed i couldn’t jump off the ground. we went to have tests when i was 8 and they did a bloodtest and i was told i had muscular dystrophy. i have physiotherapy and osteopathy every other week which helps relive the tightness in my muscles.
last year i went onto a bi-pap machine and use it every night, i love it and would’nt dare sleep without it!! do you have a bi-pap machine???
lauraxxJanuary 10, 2011 at 8:10 pm #78465Re: Younger MD sufferes, advice and a friendly chat!!!
That was how my MD came to light in the end.. a temp teacher at school when I was about 8 refered me to the school doctor as she knew the signs of MD from a pupil with MD in another school she taught in.. My mum had me back and forth at the GP since I was about 6 months old but it took a teacher and school docs word to get the GP to listen, they then found the scoliosis when doing a medical.
Glad to hear you get regular physiotherapy and osteopathy,, it really makes a difference.. Ive not had physio since I left child services..
As you know from the other board I have Rigid Spine (probably) and I am also a Bi pap Vent user.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010January 10, 2011 at 8:17 pm #78466Re: Younger MD sufferes, advice and a friendly chat!!!
Cool. I could definitely benefit from physiotherapy a few times a week, but alas the nearest NMC Centre is in Cheshire 90 minutes from where I live and at the moment I don’t drive. I suppose I could go to my local hospital, but they have no knowledge of MD. Ah well…
As for a Bi-pap: Not at the moment, although my neurologist seems to think at some point in the future I will need to be on one. Something to do with my blood gases or something, but presently they are “plumb normal”. I have very little energy these days in comparison to a few years ago and I wonder whether going on a Bi-pap would improve the situation. I’ll mention it to my physician next time I see him. I don’t relish going on one, but you make it sound like a doddle which is reassuring. Thanks.
The good thing about this particular brand of MD is it can be very variable between individuals. However, and I do not wish to sound ominous there are some things which can occur across the board for example scoliosis and cardiomyopathy. But these can be treated and managed without any real problemsJanuary 11, 2011 at 9:53 am #78469Re: Younger MD sufferes, advice and a friendly chat!!!
Well, doing exersises every day is a bore but i know it does help. i have to have private physio and osteo. i have a lot more energy now i have a bi-pap!!!! i agree that peoples conditions do vairy!!! i have scoliosis and it hasn’t moved in 6 months so that should be a good sign.January 11, 2011 at 9:57 am #78470Re: Younger MD sufferes, advice and a friendly chat!!!
oh dear you really have had a hard time !!! i love my bi-pap machine now and couldn’t live without it! did you have trouble with masks when you first got it?? i have a scar on my nose where the mask broke through the skin downto the bone but it’s getting better and i have found a mask that is better!!!
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