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    Just been diagnosed

    Hi there my name is Geoff.
    I was finally diagnosed with motor neurone disease (bulbar) 16/1/2023
    It was a huge shock as I has been a self employed plumber for the last 40 years. All my business and works have gone in the space of 3 months as this horrible disease has took hold. But when I look back now I know the symptoms started about 18 months ago. With muscle cramps and spasms. But just ignored them as I thought it was just my work...
    The neurologist has been amazing and very thorough.
    I have a croaky voice. And fasculations down both legs and arms. I am taking riluzole twice a day and dizapam for the muscle twitching. I'm scared for my wife and daughter.... So hi everybody.. Its nice to be among fellow sufferers and family's

    #2
    Hi Geoff and sorry you find yourself here with a diagnosis.
    (We may have briefly chatted elsewhere a week ago).
    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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      #3
      Welcome Geoff to the forum. This is a friendly place with lots of experience and good humour.
      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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        #4
        A warm welcome to the forum Geoff: strap yourself into your seat for the MND rollercoaster ride, but look around you, you're not alone on the ride. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Hi Geoff,

          Really sorry you find yourself here, but I hope that you find comfort and companionship in these threads

          James
          Foxes Never Quit 💙

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            #6
            Geoff Hello Geoff welcome to the forum.. as others have said I am sorry that you find yourself here. Am glad to read that you have a decent and thorough neurologist. Makes a big difference when you feel supported.

            I hope that you will find the forum a helpful place and feel able to ask any questions. Well done on your first post cos I remember how nervous I felt taking the plunge. X
            Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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              #7
              Welcome to the forum sorry you find yourself here but lots of great support on here

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                #8
                Hello Geoff. Sorry you have received the diagnosis no-one wants but you will find a lot of support here. x
                Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                  #9
                  Thank you all for careing. I am struggling with the diagnosis as I was such I fit person doing 100,sit ups and press ups every day of my working life. And in the space of 3 months I can't walk properly my voice is very horse and I keep choking. Its a lot to take on board for me and de wife. But now connecting to this forum. I feel I have good people around us. Who can help us on this journey... I thank you all.

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                    #10
                    Hi Geoff sorry to hear of your diagnosis. My dad was similar, a self employed builder who was fit and active as many on here were (boxing, cycling, table tennis etc) with symptoms for 12 months (slurred speech and increasing swallowing difficulties) put down to a mini stroke then he got the diagnosis of als, bulbar onset, may 21.

                    The diagnosis phase is really difficult and it takes time to adjust but there's plenty of advice and support here. Can i ask if you have a speech therapist to discuss voice banking? This wasn't mentioned to my dad and his voice wasn't up to it but it may be something you are able to look into. Anyway welcome to the forum.

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                      #11
                      Hi Geoff. Its a scary time for you and your family. I also have bulbar onset ALS. This forum has been my lifeline. I get more help here than medical people.

                      The best bit of advice I gained from the forum is drink lots of water. It helps with secretions.

                      Have you seen the speech and language team yet?
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        A warm welcome to the forum. I'm so sorry for your diagnosis Geoff but I'm glad you've found us. I hope you have lots of support around you in these early , overwhelming days.

                        Love Debbie x

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                          #13
                          Hi Geoff, it is very tough when, quite quickly, all the things you did in life/work become difficult or even impossible, particularly when changes seem to progress in bursts. My consultant told me that, in their many years of seeing mnd patients, those who were able to remain positive did tend to have much better outcomes. Lots of support here on this forum.

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                            #14
                            Geoff welcome to the forum. It's a fantastic source of company, support and information xx
                            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                              #15
                              Thanks. I am very glad that there is good support and advice here. And that I am among fellow sufferers...

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