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Thread: I've been recently diagnosed.

  1. #1
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    I've been recently diagnosed.

    Hi to Everyone on here. I would just like to introduce myself. My name is Steve and I'm 63 years old.

    Last Wednesday morning on 3rd Oct. I was "officially" diagnosed with MND. It's all a lot to take in as any of you sufferers, carers and family members, friends etc can imagine.

    I would say I've probably been suffering the symptons since around May this year so it's taken numerous MRI scans (3 in total), tests and visits back and forth to the hospital to arrive at this conclusion.But I guess in my own head I knew it might be something serious, just didn't imagine for one minute it might be this! The neurologist has told me I might have anything between 2 and 5 years left.

    Given this knowledge of how my health is going to slowly deteriorate, I am trying hard to concentrate on the positives and not think too much about what lies ahead. Right now, today, I can still walk (with some difficulty) and also negotiate my stairs (albeit "stooped over"). I can still drive, and obviously I can type this message to anyone that wants to read it.

    I guess I am still in the "early" stages so right now I just feel life could be a lot worse!

    The only thing that is killing me right now is the fact that I have a beautiful daughter who is just 12 years old soon to be a teenager. I always imagined her growing up into this beautiful woman, being successful, falling in love, getting married and having her own children. I was 50 when she was born. My own parents lived to be a "good" age. Dad was 85, mum passed when she was 78. I kind of imagined I might see her reach 30. So this is what upsets me the most.

    So..it's early days for me personally. I don't know if this actually helps anybody out there. I hope it does. I will write and try to respond to any replies.

    Thank You for taking time to read this.

    Steve

  2. #2
    Forum Member Twinkle's Avatar
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    Hi Steve, My husband was diagnosed last week after 9 months of symptoms ranging from slow talking to slurred speech to hardly understandable. He also stooped with his walking, it started in January and gradually got worse. He can only walk around the house with a frame and he can go upstairs with my help.
    I'm his full time carer now, and he's accepted his diagnosis but is depressed.
    Before I introduced myself on this forum I used to look through most of the posts on this forum, and members advice has definatly helped me as it will help you.
    Good luck

    Xxxxxx

  3. #3
    Forum Member Ellie's Avatar
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    Welcome to the Forum Steve, sorry you've had to join us.

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

  4. #4
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    Hi Steve and welcome to the forum, but very sorry that you find yourself here.

    I'm afraid everyone feels the same at first it is like being in a nightmare and you don't what to do , your thoughts are all over the place. It does eventually get better in time although it's hard to imagine now.

    You have to try to be strong and positive and that gets you through. It is more difficult when you have small children, although my daughter is grown up and granddaughter at uni we are very close and they couldn't be more upset !


    Please feel free to ask anything on here there will always be someone to help

    Love Chris

  5. #5
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    welcome Steve. new for us 2, my Husband who turned 59 last week
    was diagnosed 17/7. lots of support and advice on here
    Last edited by shrew; 9th October 2018 at 18:36.

  6. #6
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    Hi Steve. I am sorry for your diagnosis but welcome to the forum.

    I was told it was strongly suspected I had MND in January and It was confirmed after an EMG Initially , I was shell shocked,like everyone else. Just hearing the words is a nightmare isn't it?

    Although it doesn't seem like it for you now you do learn to laugh again. I found the support from this forum invaluable because there are some people who have lived with the condition for years and enjoy life, albeit with adaptions.

    I try to live for today and not look too far ahead because no one knows what's round the corner. The times I have found hard are when I have had a fall because it knocks your confidence so please try to stay safe.

    Take care of yourself and keep posting. As Chris says there is always someone to help or listen.
    Love Debbie

  7. #7
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    Hi Stevo
    My husband was diagnosed at the end of July, having only had symptoms for a few weeks. He’s now confined to a wheelchair. His progression has been very swift.
    I’m so sorry you’ve received this diagnosis. It’s such an overwhelming thing to have to get your head around isn’t it.
    Our Neurologist widened the prognosis somewhat and told that some people with MND can live for 20 plus years. So don’t write yourself off yet. Although 2-5 years is the average, many people do live much longer. I wouldn’t chuck away your tux (for your daughters graduation) just yet!
    My very best wishes to you.
    Jen

  8. #8
    Forum Member Lynne K's Avatar
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    Hi Steve. I'm sorry that you've had to join us on this scary journey. I too was 63 when diagnosed around November 2017. I ought to have been diagnosed the year before but a neurologist discharged me instead of sending me for a head MRI and other test. The next neurologist did this.

    All of my four children are grown up. I have several grandchildren and a recent great grandchild. Starting early was hard work but worth every moment.

    I miss things (hill walking especially) but I try to not dwell on what I can't do and instead focus on what I can do. I joined a gym a couple of months ago. I was referred by my physio to their Beats programme. If you want more info ask and I'd happily expand on that.

    I don't think that even a neurologist can give you a firm prognosis so early on. They'd need to compare muscle and nerve conduction studies from the same test done earlier to see if there's a pattern of degeneration. Even if a pattern develops it isn't always static. Degeneration can stall temporarily, go faster or slow down. So for all of us it's an unknown number of months and/years ahead. As others has said this diagnosis knocks us for six. But most of us pick ourselves back up one way or another. An occasional melt down is normal. Take care. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #9
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    Welcome Steve

    You will find a tremendous amount of knowledge, support, and great advice as well as friendship from the forum members here.

    Wishing you, and your family all the best in the days ahead

    CCxox
    .

  10. #10
    Forum Member Barry52's Avatar
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    Hello Steve and welcome to the forum.

    I’m sorry to hear about your diagnosis but as others have said your consultant is only quoting averages. Progression can be slow or plateau for a while. Try to focus on your daughter’s future such as graduation and career and spend your time with the family if possible. I don’t know if you are still working but if so try to get early retirement and enjoy the school holidays.
    If you haven’t discussed your diagnosis with your daughter then the MNDA website offers good advice on how to broach the subject.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

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