Viewing 16 posts - 1 through 16 (of 16 total)
  • #182583
    Hello

    Hello I’m Claire I’m almost 33 I was Diagnosed with myotonic dystrophy type 1 at 19!i also have a daughter with congenital myotonic dystrophy type 1 we are from wales

    Ladyc86 Ladyc86
    Participant
    Posts: 0
    Joined: 02/11/2019
    #182589
    Reply To: Hello

    HI Claire

    Welcome to forum :welcome:

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #182891
    Reply To: Hello

    Hello I’m Saku.
    I have something to ask you, who has any type of muscular dystrophy. I have myotonic muscular dystrophy type I. And I’m writing a screenplay about the disease so I’m asking you for help if anyone would be that good to share with me your experience and how did it progress. You can contact me in DM. If the post is not appropriate you can delete it. Thanks.

    saku
    Participant
    Posts: 0
    Joined: 12/11/2019
    #183016
    Reply To: Hello

    You can contact me if you want, I have DMD.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #184935
    Reply To: Hello

    Hello my name is Alan and I am new to this site, I have Facioscapulohumeral muscular dystrophy or FSHD, I have had it for a long time diagnosed when I was 19 but never had any help or support from hospitals or anyone I just get told there is nothing we can do but the neurologist I have been seeing for the last 18 months is getting a lot of test done for me now so this may help.
    Anyway just wanted to say Hello to everyone :new:

    minter1
    Participant
    Posts: 0
    Joined: 28/01/2020
    #184976
    Reply To: Hello

    Hello Alan and welcome form a fellow FHSD patient. I am so glad that you have a neurologist that will help you as there is much out there that can make a difference. For me it has been physio and the right pain killers. Please do keep us up to date with your progress.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185060
    Reply To: Hello

    Hi Alan,

    Welcome to the forum :waving:

    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
    #185091
    Reply To: Hello

    Thank you Mike and Douglas

    minter1
    Participant
    Posts: 0
    Joined: 28/01/2020
    #188063
    Reply To: Hello

    Hello, Welcome to the forum!

    larakeeling
    Participant
    Posts: 0
    Joined: 28/05/2020
    #188293
    Reply To: Hello

    Hello Folks,
    My name is Iain, 53 years young and have FSHD. For almost a year now I have been struggling to hold my head up straight when standing, it’s not near as bad when sitting. I had an MRI scan which showed that the neck muscle is about half as thick as it should be. I’m curious as to whether any other FSHD sufferers had experienced similar, from what I can see it doesn’t get much of a mention when looking at symptoms.

    Regards
    Iain

    swizz1967
    Participant
    Posts: 0
    Joined: 17/06/2020
    #188294
    Reply To: Hello

    Hi Iain :welcome:

    Sorry to hear you are struggling with your neck. I have a different MD to you but I can certainly identify with what you are experiencing. This happened to me in my teens and I still remember how much effort it took to keep my head up. In my case, it coincided with my worsening scoliosis. For years I leant forward so that gravity could help keep my head up and then when sitting I would lean forward. In later years, headrestS have come into play. I know of others who have had trouble like you but I agree, it is not something discussed a great deal.

    I am not sure what to suggest as I’m am no longer walking. Are you under one of the UK muscle centres? If not, it might be worth contacting one or getting referred so you can get specialist advice.

    All the best!

    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
    #188295
    Reply To: Hello

    Hello Iain. I too have FHSD, and I believe my father did too. In his later years he had developed a pronounced hump on his back and his head began to hand down. I believe that I am doing the same, and I have a noticeable pain in the neck despite all the pain killers I use.
    I have been told through research and through talking to those that lnow about these things that a hump and neck involvement is not unusual. I agree with my fellow moderator that you should seek advice from specialists and of course from physiotherapy.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #188296
    Reply To: Hello

    Hello Iain. I too have FHSD, and I believe my father did too. In his later years he had developed a pronounced hump on his back and his head began to hand down. I believe that I am doing the same, and I have a noticeable pain in the neck despite all the pain killers I use.
    I have been told through research and through talking to those that lnow about these things that a hump and neck involvement is not unusual. I agree with my fellow moderator that you should seek advice from specialists and of course from physiotherapy.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #188298
    Reply To: Hello

    Hello,
    Thanks for replying. I have been seeing a neurologist at my local hospital this past year, there are no specialists in my condition in my area. I live in Scotland. I feel rightly or wrongly that either I don’t express myself clearly enough or they just don’t understand how the dystrophy works. As an example I may have a weak neck muscle but others around about it are more developed around about it in comparison to others. As far as I am aware there is only 1 other in my area with FSHD and no others in my doctors practice.

    Regards
    Iain

    swizz1967
    Participant
    Posts: 0
    Joined: 17/06/2020
    #188321
    Reply To: Hello

    From my own poor level of intelligence I would suspect that what you have shown should not be unexpected. All bits of the body work together to create a whole, thus to my brain if muscles in one part start to weaken then others next door to them may strengthen to make up the difference. Such happenings are far from rare in the human experience. Add to that that we are all unique, especially in the way our MD affects us, then you can see how difficult it is for professionals to give specific advice sometimes. But strengthening the muscle, or at least try to stop its decline, via physio is essential here I woold believe.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #188762
    Reply To: Hello

    Hello,
    I am Josh from London

    I have a Learning Disability and I also need a Changing Places Toilet

    Despite living in a big City there is hardly any around

    I am campaigning to get some new ones built

    Josh_Welby
    Participant
    Posts: 0
    Joined: 26/07/2020
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