DM1 person saying hello

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  • #177143
    DM1 person saying hello

    Hello! :new:

    I’m 34 years old and I was diagnosed about 4 years ago. I have Myotonic Dystrophy type 1 (DM1).

    I have a few symptoms, such as my hands get stuck without notice when I’m doing something with them, and my tongue too. Additionally, I don’t have strength in my fingertips. It’s hard for me to press on some sprays. I have spasms, mainly in my arms. Sometimes I have pain in my upper back. More recently, I’ve had pain on the external side of my upper legs and calves.

    Does anyone have these symptoms, or similar?

    I moved to the UK about 1 year ago, and I live in Hertfordshire (to the north of London). I am still finding out how the health system works here, regarding my disease.

    I will have my first appointment with a neurologist here this week. I found him on the National Hospital for Neurology and Neurosurgery in London, which seems to specialize in neuromuscular diseases. I will be seeing him privately for now, through a clinic.

    I am also looking for a cardiologist that knows this disease. Does anyone have any recommendations?

    Thank you for your help :ty:

    Ana

    AnaFL AnaFL
    Participant
    Posts: 0
    Joined: 08/11/2018
    #177153
    Reply To: DM1 person saying hello

    Hello and welcome to the forum Ana. I am sure someone will be along soon to try and give you some advice. Clearly you are taking the best first step by seeing a neurologist.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #177199
    Reply To: DM1 person saying hello

    Hi Ana. Seems like we are in a similar situation as I am also in my thirties with muscular dystrophy type 1 but my diagnosis was a bit more recent – only about 6 weeks ago. My main symptom is difficulty relaxing grip but I’m also struggling with a lot of tiredness & have had gut symptoms for years & it’s difficult to pick apart would is & what isn’t myotonic dystrophy. The fact that I’m a GP doesn’t help although you may think it would be an advantage!
    Seeing a specialist is a great place to start (especially a consultant from the national hospital for neurology & neurosurgery) & I’m sure they can refer you privately to a specialist cardiologist that can screen your heart appropriately.
    Alternatively you could ask your GP to refer you to the myotonic dystrophy clinic at the national hospital for neurology & neurosurgery at Queens Square on the NHS. I have an upcoming appointment there soon but have been told by the private consultant that I saw who set up the clinic that as well as having neurologists they have sub-specialists (e.g. cardiologists) that work specifically with people with muscle wasting conditions.
    Just a thought.
    I’m no expert but let me know if you have other questions.
    Genevieve

    genevieve17
    Participant
    Posts: 0
    Joined: 13/04/2019
    #177200
    Reply To: DM1 person saying hello

    Sorry I mean to say I have myotonic dystrophy type 1!

    My brain is a bit frazzled with everything that is going on at the moment.

    Genevieve

    genevieve17
    Participant
    Posts: 0
    Joined: 13/04/2019
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