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Hello :D

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  • March 20, 2011 at 10:05 pm #73581
    Hello :D

    Hi my name is Amy, have looked on here a few times but this is my first post.
    My son has just been diagnosed with limb girdle 1b after 19 months of waiting since his muscle biopsy!
    I feel a little lost at the moment and would like to talk to anyone with LGMD or anyone who was diagnosed at a young age.
    :D x

    amyb89
    Participant
    Posts: 3
    Joined: 20/03/2011
    March 20, 2011 at 11:42 pm #79780
    Re: Hello :D

    Hi Amy, welcome to the forum. I have LGMD I was diagnosed at 8yrs old. Its natural to feel a bit lost and I can imagine things may feel a little overwhelming. You need to take a time to process this information. When your ready there is some great information on the MD website and there are plenty of us here you can talk to.

    How old is your son?

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    March 23, 2011 at 8:00 pm #79781
    Re: Hello :D

    Hi Vicki, my son is 5 :D he uses a wheelchair occasionally and wears splints to bed. He has deteriorated quiet rapidly since our initial diagnosis two years ago when we were told he had muscular dystrophy but they couldnt give us a type until very recently. Hope your well x

    amyb89
    Participant
    Posts: 3
    Joined: 20/03/2011
    March 23, 2011 at 8:27 pm #79782
    Re: Hello :D

    I’m good thanks. Gosh I remember night splints well! I can remember getting stuck in the duvet cause of them :roll: :lol: My LGMD has not been given a type as it is a bit like 4 types!

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    March 24, 2011 at 9:27 am #79783
    Re: Hello :D

    Hehe he loves him splints and would wear them all day if he could lol. Do you have to use a wheelhair or any other aids? Hope you don’t mind me asking :D x

    amyb89
    Participant
    Posts: 3
    Joined: 20/03/2011
    March 24, 2011 at 1:27 pm #79784
    Re: Hello :D

    I don’t mind you asking ;) I use a power chair full time, I have a ceiling track hoist in my bedroom for transfers and I also use a shower chair for toileting and showering.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    March 31, 2011 at 7:05 am #79785
    Re: Hello :D

    Hi Amy,

    I don’t have LGMD myself, but my partner does.

    He was diagnosed with MD at the age of 8, but has never had a muscle biopsy to confirm which type he has. The neurologist says LGMD, and we’re relatively sure this is accurate, but we don’t know which type. Now we are booked in for 3 weeks time to find out conclusively, partly because he really should know, and secondly because we would like to plan for a family and clearly this has a huge impact on having children.

    He has been completely wheelchair dependent since before I knew him, and relies on home care and care from his parents and myself to complete nearly all daily tasks.

    Any more questions, give us a hoi!

    AngelicPrincess

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
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