After a year being registered for the smart trial I have been invited in for screening. Queen Elizabeth hospital Birmingham. I know I may not even qualify yet but it does make me feel I am contributing in research.
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Diagnosed May 2021 bulbar onset als. -
Well done you shelly21
I have been to Oxford 3 times to be a lab rat for their efforts
I'm not in any drug trials (yet) but they stuck me in an MRI scanner last time.
It's good to feel we are helping
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Still walking and talking, and wondering what the future will bring. -
shelly21 That's good news, hope you get accepted Chick xxDiagnosed 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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WheelsOfSteel it is a good feeling. A bonus is that your mnd is monitored. I have only seen my neurologist once and that was diagnosis day. I know I won't get any better care but I will at least know how my progression is heading.
thank you Ellie. X
Diagnosed May 2021 bulbar onset als.Comment
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shelly21 What a coincidence. I was just about to post the same thing. I got a call today asking me to attend a screening appointment. Mine is also at the Queen Elizabeth Birmingham. Just waiting for all the literature to come through.Comment
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Tony Good luck Tony 🤞🤞 xxDiagnosed 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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I have my SMART trial 1st review appointment Thursday. 😸Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.Comment
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Tabbycat What does a review involve Tabby? xxDiagnosed 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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Ellie According to the paperwork I was given, it is to check I'm taking the drugs as prescribed, check for side effect and to record the disease stage using ALS-FRS(R) xxStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.Comment
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I was diagnosed beggining of 2022, not happy with the lack of therapeutic I have been self medicating with CBD oil (cannabis oil) and campaigning to allow us, MND patients , able to access medical cannabis , as CBD oil completely helps me, helps to sleep , speak and swallow , plus no more cramps or pain , evidence from overseas says cannabis can stop progressionComment
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Intriguing, what evidence says CBD oil can stop progression? Really STOP, not just slowdown?Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.Comment
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Oh, thanks. And do you think you're tolerating them OK? xxOriginally posted by Tabbycat View PostDiagnosed 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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Yes. No obvious side effects. Probably got the placebo 😄Originally posted by Ellie View PostStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.Comment
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😩Originally posted by Tabbycat View PostDiagnosed 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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Tony thats great you being called up. I think they had a slow start at the QE due to long term sickness.
Ellie 1st assessment is bloods, look at what meds you are already on & I think Alsfr score. 2nd appointment you start the med taking. It starts with low dose and builds up.
Tabbycat hopefully you have the real deal 🙂
Diagnosed May 2021 bulbar onset als.Comment
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