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.
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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.
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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.ββββββ
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Swaite! Iβm sorry youβre here too. Iβm confident youβll 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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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 xxDiagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.
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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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