Liquid Riluzole still not arrived and what a battle I have every time to swallow them. I don’t know what my GP and/or pharmacy are playing at xx
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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. -
Would it help to take the tablet in a teaspoon of low fat/fat free soya dessert, jam, stewed fruit etc. for the few days until the liquid arrives? At least I hope it will just be a few days 🤞🤞 xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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I took it last night with a couple of spoons of vegan yogurt. This morning I got it down eventually with just water and going to try that again tonight 10.30. XxOriginally posted by Ellie View Post
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.Comment
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Lynne K I think I read in a different thread it's ok to crush Riluzole...if desperate🤔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.Comment
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Yes, that's right. xxOriginally posted by LindaB View Post
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Thanks Ellie, I’ll let Steve know xxOriginally posted by Ellie View PostALS 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.Comment
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I managed the Riluzole with just water last night and this morning. I hope that the same occurs tonight and tomorrow morning. I’m going to message MyGP tomorrow morning at 8am to chase the liquid Riluzole. Fingers crossed xxALS 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.Comment
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I crush my riluzole and add it to my morning porridge. I told my neurologist and he said that was fine.Comment
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I do have Teglutik (Riluzole liquid) but all tablet medications get crushed together, mixed with water and delivered through my PEG. Easy. Recommended by Consultant Nurse.Diagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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As long as your porridge isn't made with cream... 😏👍 xxOriginally posted by Stonehengeman View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Thank you Ellie. I am amazed that you can add so many comments to so many "members" when it all has to be done by eye-gazing. I appreciate that you cannot do much other than read the computer and respond to it. As I said you are amazing as you have suffered over 14 years.
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Stonehengeman Thank you kind sir, happy to help 👍👍 (plus, I have to something other than binge watch Netflix 😉) 💖Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Ellie you are amazing and so very supportive and knowledgeable. If you don’t mind me asking where you in the medical profession.xxComment
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Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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You could be a professor with all your knowledge🧑🎓🧠😀Comment
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