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newly diagnosed myotonic dystrophy

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  • December 17, 2013 at 10:05 am #75152
    newly diagnosed myotonic dystrophy

    Hi. Ive been struggling for a while trying to cope with odd muscle behaviour and tiredness, and finally managed to see a consultant. I then had those awful EMG tests and results came back with myotonic dystrophy 1. In the meantime my husband had left me and I had to move house with 3 children. The flat i found is great but I didnt know it was DM1 and now im havingball sorts of scary issues with huge tremors that last for about 5 mins. I thinknits important to keep positive butbwaitingbfor consuktant appoinments is toture as i dont know if this is normal. I have nobody to watch out for me daily. Can somebody tell me if this is usual? Please ?

    soapyalien
    Participant
    Posts: 3
    Joined: 17/12/2013
    December 17, 2013 at 11:36 am #92710
    Re: newly diagnosed myotonic dystrophy

    Hello SoapyAllen ;waving:

    Sadly, waiting for a Consultant appointment is patience testing, but you are not alone in that wait. Nor are you alone in your symptoms and issues.

    Could some of them be stress related? I only ask because I have FSHMD and when i am stressd I tire quicker and find the physical doing harder. I can only imagine the stress you have been through and going through with what has been happening in your personal life.

    Have you been given the contact details for the “Care Advisor” in your area? These are amazing people, very conversant wth MD and can help or point you in the right direction on so many levels.

    You will find their informaton by clicking HERE

    Hang in there, we battle harder some days than others, we will try our best to support and listen :yes:

    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
    December 17, 2013 at 2:43 pm #92711
    Re: newly diagnosed myotonic dystrophy

    Thank you. I shall consider that.

    soapyalien
    Participant
    Posts: 3
    Joined: 17/12/2013
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