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Thread: Newly Diagnosed

  1. #11
    Forum Member kevin's Avatar
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    Afternoon Karl
    Like you I have family with MND . It's not great when you get your diagnosis because you know all about it . I went mad when I was told shouting at consultant . I had started in a different way to them so I never thought about MND . I rember having a dream that night arguing with death at bottom of bed death was played by consultant .

  2. #12
    Forum Member Ellie's Avatar
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    Even in Familial ALS/MND, people progress differently; no logic to it Karl!

    Are you taking Riluzole? A lot of people find it reduces their fasciculations. FWIW, as the disease progresses, they diminish greatly, so don't wish them away

    I did regular hydrotherapy and physiotherapy for shoulder pain caused by weakened muscles around the scapulae, which was very beneficial and done by physiotherapists specialising in neurological conditions. (at my local hospice) If you can get referred to your hospice, they are a great resource - you probably already know this from your brother, but you're your own man, living your own life...

    You're wise to stay safe too; a bad fall can have unnecessary complications.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
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    Sounds like a scene from a Terry Pratchett novel !! It's a double edged sword when you have a family member with MND on one hand you see the struggle they go through with each phase of the disease, but on the other you also see (at least in my brothers case) how they come to terms with things and still manage to live a happy life. I have lived with the knowledge that i could get this disease for 20 odd years since my mum told us about the family history so getting it wasn't much of a surprise, so i'm staying positive and focusing on things i can still do now and in the future....

  4. #14
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    Not been but on it yet will ask my GP about it but I think I'll have to wait until my appointment in Oxford at the Radcliff .... my Brother is still on it 5 years post diagnosis, my brother never had pain funnily enough so he never had physio, i will definitely explore that option. I have had a couple of falls when a guy barged into me and knocked me over and when i slipped in the snow, very difficult to get up some kind people helped me
    Karl

  5. #15
    Forum Member Terry's Avatar
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    Hi Karl;

    I would push your doctor or call the Mnd clinic about getting riluzole. Sometimes the doctors are against prescribing it because it then might go on there budget.

    Funny how kind most people actually are.

    Try to get an OT as soon as you can for things, including a rise and recline arm chair.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #16
    Forum Member AndyB's Avatar
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    Hi Karl and welcome,

    As to the pain. I get cramps in my legs and abdomen. When I wake in the morning I have to resist the urge to have a good stretch since if I do I get really painful cramp in my legs, usually the calf. The abdominal cramp can occur by simply bending down to fasten my shoe laces but it doesn't happen that often. I don't yet take any pain relief medication .

    I've been taking Riluzole since shortly after my diagnosis in May 2016. My MND nurse obtains it for me from the hospital. She did ask my GP if they would take over prescribing it but they declined. (How nice of them).

    I do sometimes get fasiculations but I've sort of got used to them now so often don't notice.

    Best wishes
    Andy

  7. #17
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    Thanks Andy,
    The cramps are worse in the morning for me too, stretching can be a bit painful - as can yawning, I get some quite bad cramps in my neck. I'm not on Riluzole yet, like you, my GP wouldn't prescribe it - the prescription has to come through the MND specialists at Oxford,
    Cheers,
    Karl

  8. #18
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    Thanks CC,
    thats good to know,
    Karl

  9. #19
    Forum Member Raj's Avatar
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    Bananas are the best...

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