Still waiting to find out my subtype x

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  • #176754
    Still waiting to find out my subtype x

    Hi I was told last year I probably have a muscular myopathy. It’s been nearly a year and I’m still waiting to find out which subtype I am. I had to get my dads medical records as he was diagnosed about 30 years ago, found out he was told it tubular myopathy but he was the first adult they’d come across and they didn’t know at the time how people were catching it. So my dad at 70 years old decided to not bother going back. My consultant has decided that it was 30 years ago and was probably a wrong diagnosis so I’ve been waiting for a muscle biopsy for about 6 months now. Last I heard the hospital had closed down the open biopsy procedure so I feel like I’m in limbo x

    Lees-angel
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    Joined: 17/05/2018
    #176923
    Reply To: Still waiting to find out my subtype x

    It’s no doubt little comfort but you are not on your own in awaiting a diagnosis. It is a very frustrating place to be and it can be hard to convey to some, just why it is good to know. In my own case, I was 38 when I got a concrete diagnostic of which sub-type. I’d been given a general diagnosis aged 5. It hasn’t changed much for me on a day-to-day basis but knowledge helps me get a handle on the condition and I can chat to others with the same diagnosis and learn from them.

    The good news is that we are living in a time of medical advancements in testing and identifying new mutations. I hope you don’t have to long to wait.

    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
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    Posts: 2,246
    Joined: 05/03/2015
    #176924
    Reply To: Still waiting to find out my subtype x

    Thank you for your kind words. I’m hoping it won’t be much longer as I have children and now grandchildren. I do suspect that some may have the same thing so will be good for them to find out earlier than I have.

    Lees-angel
    Participant
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    Joined: 17/05/2018
    #179884
    Reply To: Still waiting to find out my subtype x

    I can only agree and sympathise with your frustration, I am now 48 and still no wiser as to which type of dystrophy I have, we currently have 4 generations with the same illness including my 7 year old grandson. I was told that I had a dystrophy circa 1979 but was never followed up as they didn’t really know what to do about it, finally managed to get a muscle biopsy in 1991 but have never been given a full diagnosis as the hospital has since closed down and no records can be located!

    Hopefully you will be able to get a diagnosis sooner rather than later! :new:

    Corrine71
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    Joined: 24/07/2019
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