Viewing 9 posts - 1 through 9 (of 9 total)
  • #182583
    Hello

    Hello I’m Claire I’m almost 33 I was Diagnosed with myotonic dystrophy type 1 at 19!i also have a daughter with congenital myotonic dystrophy type 1 we are from wales

    Ladyc86 Ladyc86
    Participant
    Posts: 0
    Joined: 02/11/2019
    #182589
    Reply To: Hello

    HI Claire

    Welcome to forum :welcome:

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #182891
    Reply To: Hello

    Hello I’m Saku.
    I have something to ask you, who has any type of muscular dystrophy. I have myotonic muscular dystrophy type I. And I’m writing a screenplay about the disease so I’m asking you for help if anyone would be that good to share with me your experience and how did it progress. You can contact me in DM. If the post is not appropriate you can delete it. Thanks.

    saku
    Participant
    Posts: 0
    Joined: 12/11/2019
    #183016
    Reply To: Hello

    You can contact me if you want, I have DMD.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #184935
    Reply To: Hello

    Hello my name is Alan and I am new to this site, I have Facioscapulohumeral muscular dystrophy or FSHD, I have had it for a long time diagnosed when I was 19 but never had any help or support from hospitals or anyone I just get told there is nothing we can do but the neurologist I have been seeing for the last 18 months is getting a lot of test done for me now so this may help.
    Anyway just wanted to say Hello to everyone :new:

    minter1
    Participant
    Posts: 0
    Joined: 28/01/2020
    #184976
    Reply To: Hello

    Hello Alan and welcome form a fellow FHSD patient. I am so glad that you have a neurologist that will help you as there is much out there that can make a difference. For me it has been physio and the right pain killers. Please do keep us up to date with your progress.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185060
    Reply To: Hello

    Hi Alan,

    Welcome to the forum :waving:

    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
    #185091
    Reply To: Hello

    Thank you Mike and Douglas

    minter1
    Participant
    Posts: 0
    Joined: 28/01/2020
    #188063
    Reply To: Hello

    Hello, Welcome to the forum!

    larakeeling
    Participant
    Posts: 0
    Joined: 28/05/2020
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