Last night I was awoken by sharp pain in both of my big toes. I'm not moaning I just want to document my progression for whoever comes next. Like the cubs say init? πx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Probably squirrels looking for nuts. πΏwhen i can think of something profound i will update this. -
I just had my third swab for the bigger C and got the happy news that I am probably going to be spending another couple of nights in a ward. I don't know if I'm happy or sad. π€πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Where is this bigger c? When did you have swabs? What's been going on that you haven't shared? π€when i can think of something profound i will update this.Comment
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Err Covoid test? π€xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Thought you meant cancer. Oh my goodness. Have you any symptoms?when i can think of something profound i will update this.Comment
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No it was for my hospital visitBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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I'm guessing you needed a clear covid test before your admission Matthew. I really hope you get answers from staying in for a couple of nights and you're well looked after.
I get, what I imagine is nerve pain in my super, curly toes ( my toes are amazing !) It wakes me in the night and I can't bear anything on them. My OT has got me a frame to keep the covers off.I'm waiting for botox but I'm not sure if it's suitable if you're still mobile.
Love Debbie xComment
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FGS Matthew, just spit it out π² It's like pulling π¦·π¦· (special analogy for you π)
What's the hospital stay for - teeth, NIV, xyz?? You wouldn't have started this thread if you weren't going to eventually divulge all.βDiagnosed 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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It's for NIV and cough assist at the Whythenshaw πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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What a shame you've to go in as an inpatient πͺβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
βComment
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Well that's what the nurse told me today. I have an overnight test tonight and tomorrow to do and it will be up to the consultant but Joshua seemed certain. πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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matthew55 how long did you wait for the appointment? The consultant has referred me to Wythenshawe for a breathing assessment two weeks ago, but I've not heard anything yet.Each day is made easier with a bit of humour.Comment
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matthew55 Keep us updated xβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
βComment
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Mine came out of the blue and that was a week ago but I gather a report was made of me and it sounded like I'm close to dying aparantly πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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