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Newbie looking for the latest info

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    Newbie looking for the latest info

    Good morning, I just joined this group, and like so many others with ALS, always searching for more information. I was diagnosed in July 2021 with bulbar ALS after a year of being told I had Bells Palsy. Seems inconceivable that a definitive test for this disease hasn't been developed in over 150 years. I started in a Healey drug trial last week and hopeful I received the medication and not a placebo. I'm becoming almost impossible to understand when I talk and swallowing issues are increasing. Hope to learn from fellow ALS patients in this forum and to add anything that I can from my experience.

    #2
    Swaite! Sorry you find yourself eligible to join us in this forum....but very glad to say you're among friends and the support here is amazing as I'm sure you've gathered reading the various threads.
    It's great you're straight into a trial and I hope you keep us posted. Fingers crossed it's the 'real deal' although your participation helps us all....thank you.
    Look forward to getting to know you virtually...take care.
    πŸ‘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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #3
      Swaite! I’m sorry you’re here too. I’m confident you’ll get a full range of experiences from friends in this forum.
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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        #4
        Swaite! Again welcome from me, and I too am so sorry you have had to join this forum. That's really good to hear you are participating in a drugs trial already. Hopefully it will be a trial that helps you and will be helpful for the future. I hope you find help and support here and some laughs also which are much needed. take care xx

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          #5
          Welcome Swaite! to our family. Here you will find help, support and love in abundance. Sorry to see you but happy to meet you. 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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            #6
            Swaite! Welcome here too from me. X
            Last edited by Lynne K; 7 December 2021, 15:52.
            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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              #7
              Hello Swaite! too have bulbar onset and seem to about the same stage as you with speech and swallowing. I wish I could suggest something useful. Maybe tomorrow who knows. xx

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                #8
                Swaite! welcome from me too

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                  #9
                  Hi Swaite! same as you, Bulbar diagnosed in July (after started slurring with speech in April 2021), I know how terrifying it can be, worrying you will choke or people just cannot understand what you are saying. Stay strong and like other say just take one day at a time and try not to think about the future.

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                    #10
                    Went to the gp back in January 2020 when my voice changed. The rest is history. πŸ‘€πŸ€—πŸ˜πŸ‘Œxx
                    ​​​​​
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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