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I finally have a diagnosis

Viewing 6 posts - 1 through 6 (of 6 total)
  • June 2, 2013 at 9:29 pm #74885
    I finally have a diagnosis

    After suffering muscle weakness from birth, I found out I have a muscle disease – probably a myopathy – in my early 30s. Over the past 10 years every consultant I’ve seen has drawn a blank as to which type I have, so I slowly got used to the idea that I’d never find out.

    I had a second muscle biopsy a while ago, and it shows I have centronuclear myopathy. I’d not heard of this , it’s very rare and there are different types of inheritance. A slide of my sample is being sent to Newcastle to try to identify which variant I have.

    I feel I’m finally getting to the end of a long process and getting some answers!

    redpanda
    Participant
    Posts: 45
    Joined: 26/09/2010
    June 3, 2013 at 7:36 am #89076
    Re: I finally have a diagnosis

    It sounds like the medicos have made a big step forwards in your diagnosis – I am pleased for you as I know how finding out these things help us get a handle on what’s happening to us and a better understanding of our conditions. Keep in touch :)

    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
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    June 3, 2013 at 8:29 am #89077
    Re: I finally have a diagnosis

    Superb news.

    Thanks for letting us know. Glad they kept at it and finally gave you a
    few answers. It seems they are making progress on even the rarer conditions.This
    must augur well for all of us as they make more and more breakthroughs.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
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    Joined: 27/09/2010
    June 3, 2013 at 10:31 am #89078
    Re: I finally have a diagnosis

    That sounds like one heck of a journey…this is fantastic news :)

    Muscular Dystrophy UK staff member

    Alexa Follen
    Keymaster
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    Joined: 12/05/2015
    June 6, 2013 at 2:53 pm #89075
    Re: I finally have a diagnosis

    So pleased that you are finally getting somewhere .Welldone you :D

    Lorraine x

    Anonymous
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    Joined: 01/01/1970
    June 10, 2013 at 9:37 pm #89079
    Re: I finally have a diagnosis

    Woohoo Redpanda:-) a diagnosis at last.

    Hope you are ok with the news and sincerely hope Newcastle can give you more answers – they do great stuff there.

    Do keep us posted.

    Best wishes

    GILL

    miracle77
    Participant
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