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limb girdle 1b

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  • November 3, 2014 at 7:35 pm #75423
    limb girdle 1b

    Hi all. New to the site. Anyone else got lgmd 1b . Im from dublin ireland.

    mimsey07
    Participant
    Posts: 1
    Joined: 03/11/2014
    November 4, 2014 at 9:04 am #95000
    Re: limb girdle 1b

    :waving: Hello and Welcome to the TalkMD forum!

    I’m not sure if we have members with that specific variant but there are quite a few with an undiagnosed LGMD type. You can read past threads by typing ‘LGMD’ into the search box in the top right corner of the page.

    There are quite a few issues that crossover with other sub-types of MD so it may be there are other topics you might find interesting and relevant to you.

    It’d be great hear more about you if you wish to share your story or if you just want to vent or chat – it’s a pretty good place to do so :)

    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
    Posts: 2,246
    Joined: 05/03/2015
    January 21, 2015 at 12:58 pm #95001
    Re: limb girdle 1b

    Hi, my daughter has recently been diagnosed with Limb Girdle 1b. I would be interested in sharing experiences since it is a pretty uncommon type of MD.

    LMBA76
    Participant
    Posts: 2
    Joined: 21/01/2015
    January 26, 2015 at 1:24 pm #95002
    Re: limb girdle 1b

    Welcome to the forum LMBA76 :)

    Look forward to reading more posts, feel free to have a good browse, searching for certain words or phrases can be very useful and please ask away if we can be of any help.

    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
    Posts: 2,246
    Joined: 05/03/2015
    October 1, 2016 at 9:19 am #138811
    Reply To: limb girdle 1b

    I have just been diagnosed with limb girdle 1b last month. Explains the health issues I’ve been having. I’m still trying to process the diagnosis and what it means for me long term. I’d be interested to hear about your story and how it’s affecting you!

    Jagger Somers
    Participant
    Posts: 0
    Joined: 01/10/2016
    October 1, 2016 at 11:12 am #138813
    Reply To: limb girdle 1b

    Hi, I have a type of Limb Girdle MD and am still undergoing diagnosis. I have been told that I have a rare type, which is why my diagnosis is taking so long. I’d love to hear your story or anyone else’s about how LGMD affects you. :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    October 16, 2016 at 9:44 pm #142002
    Reply To: limb girdle 1b

    Hi Jagger and everyone else,

    I have an unspecified type of LGMD. It has been progressive over the years. I now use two walking sticks and a mobility scooter. I also use a stairlift now. I have a hoist in my car for the scooter, which means I can go out. Although going out is stressful and difficult due to access, seating and suitable facilities. I am a Teacher of the Deaf but my role is purely assessment now due to my reduced mobility. I work three days, which is plenty! I suppose that it is in the past three or four years that my condition has really impacted upon me.

    Hope to hear from you soon.

    Shevvyt1

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
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