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Nemaline Myopathy

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  • August 13, 2018 at 8:59 pm #160508
    Nemaline Myopathy

    Hi,my name is Martin and I live in Banbridge NIreland , I’m 49 and after nearly three years I have been diagnosed with Nemaline Myopathy .
    I have excessive pain and weakness amongst many other symptoms and would like to hear from anyone with this specific form of muscular dystrophy

    martinmccrory
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    August 14, 2018 at 11:42 am #160530
    Reply To: Nemaline Myopathy

    Hello and welcome to the forum Martin. I am sure someone will come along shortly to help you. Do you have any specific questions that you need answering?

    Mike

    So many love songs, so little love.

    embayweather embayweather
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    Joined: 02/11/2015
    August 14, 2018 at 12:40 pm #160531
    Reply To: Nemaline Myopathy

    Hi Mike
    This condition has completely ravaged our lives . Constant pain, weakness , dizzy, short of breath are some of the symptoms. I am told this is a rare form of Muscular Dystrophy and would like to contact others who have the same condition. I can no longer work and getting out is rare .
    I am waiting on an appointment in London as services here in n Ireland are very scarce .

    Martin

    martinmccrory
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