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LGMD Possible Diagnosis

Viewing 9 posts - 1 through 9 (of 9 total)
  • November 7, 2018 at 6:31 pm #163614
    LGMD Possible Diagnosis

    Hi All,

    I am currently in the process of being diagnosed with possible LGMD. I’m still undergoing tests, muscle biopsies, heart scans etc.

    I was wondering if anyone else has been through this process and can offer support. At the moment, I’m currently struggling with what’s happening.

    So any advice or past experience from anyone would be greatly appreciated.

    Many Thanks
    Bradley

    BradB1993
    Participant
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    Joined: 15/10/2018
    November 8, 2018 at 12:39 pm #163650
    Reply To: LGMD Possible Diagnosis

    Hello and welcome to the forum Bradley. I am sure that we have a number of fellow LGMD people on the forum amd I am sure they will be in contact soon. In the meantime there is a contact group on Facebook you might look into.

    On-line LGMD Support Groups on Facebook:

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    November 25, 2018 at 4:41 pm #164249
    Reply To: LGMD Possible Diagnosis

    Hi Bradley,

    I have LGMD and im a young 45 lol, I remember when i was diagnosed 25 years ago, it really was a bolt out of the blue, I noticed I couldnt run as fast as I use to so went to Dr.

    If you want to have a chat send me PM or reply on forum.

    Regards John

    JohnB
    Participant
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    Joined: 20/08/2014
    November 26, 2018 at 7:03 am #164263
    Reply To: LGMD Possible Diagnosis

    Hi John,

    Thanks for your reply. Yes I would like to chat to you if you could.

    I’m not sure how to PM you though haha

    Regards
    Bradley

    BradB1993
    Participant
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    Joined: 15/10/2018
    November 26, 2018 at 10:06 am #164268
    Reply To: LGMD Possible Diagnosis

    hi to John and Bradley

    :welcome:

    The Forums Private Message facility is not working at the minute. :?

    Hope you are both well and look forward to your posts.

    Catatude
    Mod

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    November 26, 2018 at 10:05 pm #164306
    Reply To: LGMD Possible Diagnosis

    Hi Bradley,

    I am a member of a forum on wheelchairdriver.com My name on there is iceuk, if you register to join website you can send me a pm. I dont really want to write email or mobile number on open forum as im sure some bot will harvest for spamming.

    Regards john

    JohnB
    Participant
    Posts: 0
    Joined: 20/08/2014
    September 30, 2019 at 12:19 am #181479
    Reply To: LGMD Possible Diagnosis

    HI Bradley

    I was diagnosed about 15-17 years ago of sorts. Been through just about everything so far. More than happy to talk or chat about it. I know it’s a year since you posted but here if you need an ear to bend!

    All the best

    Mark

    "Stairs? Yes we have stairs, but there's only three" :-/

    Mark
    Participant
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    Joined: 21/02/2017
    September 30, 2019 at 9:31 pm #181525
    Reply To: LGMD Possible Diagnosis

    Hello. I was diagnosed last year with lgmd2L. I was getting sore shoulders and hips but never had any signs of weakness. My cks where always very high, between 3 and 4000. Gps always said some people just have high cks and I never thought anything of it until I met with a rheumatologist because my shoulders were getting very sore who discussed it with a neurologist. I met her and all it took was to see my ck levels and my large calves! She just did the genetic test straight away and was right with her suspicion. By reading this forum I think I got quite lucky with such a quick diagnosis. It did come as quite a shock to me but it does get easier over time :)
    Just a question if anyone knows the answer to and that is will my calves shrink at all?

    Ems15
    Participant
    Posts: 0
    Joined: 31/07/2018
    September 30, 2019 at 9:45 pm #181526
    Reply To: LGMD Possible Diagnosis

    Hi,

    Your calves will eventually shrink, mine use to be huge but no more.

    JohnB
    Participant
    Posts: 0
    Joined: 20/08/2014
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