Viewing 20 posts - 1 through 20 (of 35 total)
  • #73420
    Younger MD sufferes, advice and a friendly chat!!!

    :D :D Hello
    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!

    lauraxxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78458
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi Laura,

    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 :-

    http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/112_minicore_multicore_myopathy

    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!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78459
    Re: 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!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78457
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hey Laura,

    glad you found us. Hope you enjoy the forum and ask/chat away :)

    Sarah

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #78460
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi Laura

    Welcome to the forum :)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #78461
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi
    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.
    lauraxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78468
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi Laura,
    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,

    Mark

    Mark117
    Participant
    Posts: 24
    Joined: 29/11/2010
    #78467
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Thank you Mark!! It’s lovely to finally hear from someone with minicore myopathy!! How old were you when you were dyagnosed?

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78463
    Re: 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….?

    Mark117
    Participant
    Posts: 24
    Joined: 29/11/2010
    #78464
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi mark
    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???

    lauraxx :D

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78465
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi Laura

    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. :D

    take care
    Cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78466
    Re: 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 problems :D

    Mark117
    Participant
    Posts: 24
    Joined: 29/11/2010
    #78469
    Re: 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.

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78470
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi cat,
    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!!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78471
    Re: Younger MD sufferes, advice and a friendly chat!!!

    I’m 24….please let that fall into the “younger” category! lol

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #78462
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi
    of couse 24 counts!!!! lolage :lol: :lol: :lol: :lol: :lol: :lol:

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78472
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Sweet! Sometimes i think im more 14 than 24 to be honest :lol:

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #78473
    Re: Younger MD sufferes, advice and a friendly chat!!!

    :lol: :lol: :lol: :lol: :lol: :lol:

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78474
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Sweet! Sometimes i think im more 14 than 24 to be honest

    cool! 8-) Do we all get to zaap 10years of our age ;)

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78475
    Re: Younger MD sufferes, advice and a friendly chat!!!

    That would be nice! ;)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
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