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I’m new x

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  • September 4, 2013 at 10:46 pm #75010
    I’m new x

    Hi,
    My 2 year old son was diagnosed with muscular dystrophy , how did everyone cope ? I’m finding it very hard ,very emotional , :new:

    Danish1
    Participant
    Posts: 4
    Joined: 04/09/2013
    September 5, 2013 at 11:05 am #90926
    Re: I’m new x

    Hi Danish,

    Welcome to the MD forum. Yes, it is hard coping with a diagnosis, whether it’s for yourself or your child. You will find there are others in your position here so it’s a place to come to for support and advice. Keep checking in and don’t be afraid to join in.

    best wishes,

    Sybylla

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    September 6, 2013 at 10:35 am #90927
    Re: I’m new x

    Welcome to the forum.

    This will be a difficult time and very confusing.

    Many of the forms of MD are very variable so it might not be as bad as you think in your worse
    moments. Feel free to chat, find out more or just vent if you want. People here will understand.

    There is a link to the MDC charity at the top of the page with lots more information,
    including the network of Regional Advisors whose job is to help people.

    "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
    September 6, 2013 at 8:02 pm #90928
    Re: I’m new x

    Thank u for replying , I’m just waiting for December need to see the Docter , hope they can do tests on him and can tell which sort he has I know it’s not duchenne so every one tells me its a blessing he hasn’t got that .

    Danish1
    Participant
    Posts: 4
    Joined: 04/09/2013
    September 30, 2013 at 5:53 pm #90929
    Re: I’m new x

    Welcome to the forum Danish. All the best of luck for the tests… We will all have our fingers crossed. Do feel free to ask any questions in the forum – we are a friendly bunch :)

    Muscular Dystrophy UK staff member

    Alexa Follen
    Keymaster
    Posts: 32
    Joined: 12/05/2015
    October 16, 2013 at 8:54 pm #90930
    Re: I’m new x

    hi Danish1

    I am also new to the forum and my son was diagonosed with what they believe is Becker MD in April this year he is now 2yrs 8 months. The diagnosis came from concerns over Max’s develpment he currently operates at a 12 month level.

    I would be interested in hearing what brought about your sons diagnosis and how you are coping.

    When i got the diagnosis I was 7 months pregnant with my daughter who is now 4 months old. her birth brought about a distraction to this awful news and i feel it is only just sinking in now. I constantly worry about Max’s future, I cry most days and dream everynight, even when dreams are not about Max, people in my dreams are wearing the tangerine MDc t-shirts. I feel like I need to carry on as norm as others in the family don’t like to talk about it but I feel like its starting to take over and I want to remain as postive as possible.

    I would love to hear from you or others who are going through the same x

    Max-smum
    Participant
    Posts: 1
    Joined: 16/10/2013
    October 17, 2013 at 11:35 am #90931
    Re: I’m new x

    Hi Max-smum, welcome to our corner of the web.

    I came from the family of “Jut get on with it and don’t discuss” about anything, not just MD. My diagnosis was back in the steam driven early 1970’s. There is no right way or best way, there isjust the way you choose to do. There is a wealth of information on the MDC main site, it can be overwhelming and you should give yourself time to be ready to read more and ask more and also take your time with the information – we all knee-jerk react, but your bonny boy will adapt to his own ways and he will have his own personality and qwerks.

    Do you have a close friend you can tlk to? Maybe you need someone who is not directly involved closely who you can talk with.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
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