November 12, 2019 at 12:07 pm #182891Reply 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.sakuParticipantPosts: 0Joined: 12/11/2019January 28, 2020 at 10:13 am #184935Reply 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 everyoneminter1ParticipantPosts: 0Joined: 28/01/2020January 28, 2020 at 12:41 pm #184976Reply 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.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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