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    #16
    One place I do get them which always feels a bit odd is my stoma site.
    Each day is made easier with a bit of humour.

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      #17
      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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        #18
        My tongue is on its last legs, but on the bright side I can't feel myself biting it anymore. 😁x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #19
          The other day on Zoom I noticed I was twitching just to the side of my nose, hate seeing myself on zoom
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #20
            Zoom is something I really don't want to do. 😞x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #21
              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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                #22
                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
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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