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    Hello

    Hello,
    I am new, so an intro is good. I am Johnny5, aka, John from Florida. I first started symptoms (fasciculations) in the summer of 2015 after a lumber/nerve injury. By 2017 they had spread, and by 2018, weakness began setting in my left leg. Diagnosed w/possible ALS in Aug 2018, then probable ALS in Oct 2019. I still walk with a cane (slow walking) and most of my symptoms are on my left side, or asymmetric. I also have mild swallowing issues, and my voice is starting to get pretty hoarse. I am blessed with very slow progress.
    My brother had Bulbar ALS. He was diagnosed in Oct 2015 and left us on 6 Jan 2016. So far, no genetic familial tests have been run except for the C9orf72 (?) which was negative.

    #2
    Hey Johnny5 it's a bum deal make no mistake. But you won't find any sharks in here. More like mermaids. We are all in this together and you never need to feel alone pal. Welcome. Stay Strong Matthew.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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      #3
      Hi John from Florida

      so nice to meet you. Really lovely people here who are happy to share all kinds of problems, sadness and laughter.

      love and hugs Denise xxx

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        #4
        Hi Jonny5. Welcome aboard the ship. We've all got scurvy, the lashings appalling and the boat's going down. Apart from that ... we're carrying on fine
        Last edited by Gordan1111; 9 July 2021, 09:29.

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          #5
          Hi Johnny .
          Glad your journey seems to be slow.Hard that your saw your brother go through the MND quickly.
          Hope you get support on this forum
          Best wishes
          Mary

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            #6
            Johnny5 welcome to the forum....great like minded people here...πŸ‘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 Johnny and welcome to forums. I’m glad that your journey with MND is slower than your poor brother’s was. Love Lynne x
              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
                Johnny5 Welcome Johnny.

                You need to have proper gene testing, given your brother also had ALS. 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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                  #9
                  Hi John and a warm welcome to the forum. There lots of friendship and support on here .
                  Love Debbie x

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                    #10
                    Hi Johnny5,

                    No one really ever wanted to be here, but you're very welcome now you have arrived. There are many different people, seemingly all with different stories. All with different experiences, which can be very comforting. Yours is a particularly poignant story and I am so sorry that you're following your brother - albeit at a slower rate.
                    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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