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    Hi 😊 New on here

    Hi

    #2
    Diagnosed March 2021 bit of a shock to say the least as l was originally phoned by Dr to say Creatine CK levels were too high .
    Refer Lipids then Rheumatology who then referred me to Neurology.

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      #3
      Welcome to our happy family. I'm sorry you have joined us but you've found the right place for support, advice and humour. Stay Strong πŸ‘πŸ€—πŸ˜€πŸ˜šxx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Welcome to a more exclusive club than Derby County. All the very best.
        Last edited by John D; 16 August 2021, 17:12.
        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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          #5
          Derbyram21 A warm welcome to the forum Derby ⚽ ⚾ (yeah, it's a baseball, couldn't find a cricket ball 😏)

          Love Ellie. 😘

          Hang on... I found this 🏏 - is this a cricket bat?
          ​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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            #6
            Derbyram21 welcome to a great forum with excellent members full of useful advice & tips. Sorry for your diagnosis...shattering news. πŸ™
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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              #7
              Hi β€˜Derbyram21’ welcome here. You’ve found the right place for tips, chat and sometimes humour. It must be hard for you at the moment as we’ve all been there but hopefully you’ll get all of the support that you need from your local palliative care services. Take care, Lynne
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

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                #8
                Hi Derbyram21
                So sorry you have MND.The shock is hard as it fills your head with so many questions.I hope you are getting support from health professionals ,family and friends.Ask anything on this site and usually members are happy to support .
                Best wishes
                Mary

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                  #9
                  [QUOTE=Ellie A warm welcome to the forum Derby ⚽ ⚾ (yeah, it's a baseball, couldn't find a cricket ball

                  Ellie - Did you know a baseball is quite appropriate or was it just a fluke?

                  Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                    #10
                    Originally posted by John D View Post
                    Ellie - Did you know a baseball is quite appropriate or was it just a fluke?
                    I could fib and say it's all about the stitching, or some guff like that but, no, I just chose the ball most like a cricket ball, i.e, fluke 🀩 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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                      #11
                      Lol Baseball very apt or used to be in the old days. Thank you for your warm welcome πŸ™‚πŸ™‚ l am getting support but it's certainly very daunting ! As l said to the Specialist Nurse ( who never answered lol)in the day of diagnosis if this had been 4 yrs ago l would have gone and lit a fag up ! Lots to learn on this journey. Once again my love and light to you all x

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                        #12
                        ​​​​Hi Derbyram21- yes first inkling I had something wrong was raised lymphocyte level


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                          #13
                          I just thought it was my weight etc Dr phoned me at home then referred to lipids clinic who l still have to see . But the rest as they say ...

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                            #14
                            Hi. Welcome to the best place for never feels alone β™₯️

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                              #15
                              πŸπŸπŸπŸπŸπŸπŸπŸπŸπŸπŸπŸπŸπŸ˜€xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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