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  • matthew55
    replied
    I've had the radiology and all I will say is that it easier to get a dry mouth wet than a wet mouth dry. 👍😊x

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  • David R
    replied
    Hi Matthew, I’m the same as you, nose twitches a lot and mainly my left eye surrounds go mad, think you said before your MND is Bulbar onset? which is the same as me. I’ve lost speech complete and swallow like you. get a few odd arm and leg twitches but luckily I’m still quite physically able to move them although they are a bit weaker. How are you getting on with the saliva? I’m still waiting for some help with having either Botox or radio therapy like you had.

    Regards David

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  • matthew55
    replied
    Zoom is something I really don't want to do. 😞x

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  • Heather R
    replied
    The other day on Zoom I noticed I was twitching just to the side of my nose, hate seeing myself on zoom

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  • matthew55
    replied
    My tongue is on its last legs, but on the bright side I can't feel myself biting it anymore. 😁x

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  • Mary C
    replied
    Hi All, yes I get fasciculations[twitching] daily all over my body.I find I am more aware of them when in bed or sitting quietly.It is disturbing when I get them around my mouth.My Neurologist did say my tongue is affected which again is a horrible fact.Sometimes I can see my hands and legs twitching ..not a nice feeling but painless.Best wishes.Mary

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  • GaryM
    replied
    One place I do get them which always feels a bit odd is my stoma site.

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  • GaryM
    replied
    Originally posted by Shaun View Post
    Bottom lip for me , I think it only effects voluntary muscles are eyelids voluntary?
    Well mine are, otherwise they might close when I'm walking around. 😉

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  • matthew55
    replied
    No clue but it happens so probably, think sleeping 😁x

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  • Shaun
    replied
    Bottom lip for me , I think it only effects voluntary muscles are eyelids voluntary?

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  • Nettie
    replied
    My bum 😬

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  • SueM
    replied
    Mine was my top lip, one side only, thought I was trying to do an Elvis impersonation

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  • matthew55
    replied
    Twitching is spot on. The eye lids feel particularly strange 😁x

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  • GaryM
    replied
    Assuming that you mean twitching, I seem to get them everywhere. The only place I've not noticed them is, to use a phrase from 'Upstart Crow', in my cod-dangle. But there are no muscles there. 😁

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  • nunhead_man
    replied
    Really? I thought this was just my imagination or just tired eyes

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