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    Numb tongue

    Has anyone experienced a numb tongue as a symptom? Could it be associated with Riluzole? I’ve been taking Teglutik (liquid version of Riluzole) for 9 months. When I was taking it orally I used to get a numb mouth for about 15 minutes after taking it. I’m now taking Teglutik via my PEG (because it tastes horrible) and I’ve had this numb tongue feeling for hours every day for the last couple of weeks. My speech and swallow aren’t great, is this just a next step? I’ll mention it to a doctor but thought I’d just ask here first.
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    #2
    My tongue is almost dead but it started just being numb about a year ago. Happy Days 😉😁🤗👍xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Love and hugs to both of you. Xx

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        #4
        Lower lip going numb and keep biting it when eating upside is at least I can still eat …..for now.
        Positive for today is my blood gases are normal only just but normal so have
        treated myself to a large box of M&S Swiss chocolate…. got to eat them while I can 😇

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          #5
          Originally posted by matthew55 View Post
          My tongue is almost dead but it started just being numb about a year ago. Happy Days 😉😁🤗👍xx
          i suspected it might just be another step on the journey. Thanks!
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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            #6
            No sugar coating here my friend 😁🤗😀👍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Although I still have some feeling in my tongue, I have no control over it. When I sneeze it flops into gaps in my teeth which is both painful and disconcerting!
              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                #8
                I often find mine stuck in teeth. I have to move it manually. 😉😁👍🤗xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Originally posted by John D View Post
                  Although I still have some feeling in my tongue, I have no control over it. When I sneeze it flops into gaps in my teeth which is both painful and disconcerting!
                  When I sense a sneeze coming on I’ve learnt to quickly clamp my teeth closed to avoid severe damage to my numb tongue. Thankfully my jaws do still work (but who knows for how long?!)
                  Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                    #10
                    PeterPan Can't you feel anything at all in your tongue?

                    My tongue can't move but boy do I feel pain when my teeth clamp down hard on it 😲 😘
                    ​Diagnosed 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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                      #11
                      Get a gum shield 👍😁🤗😍xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        Originally posted by matthew55 View Post
                        Get a gum shield
                        So you can feel pain?

                        ​Diagnosed 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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                          #13
                          Originally posted by Ellie View Post
                          PeterPan Can't you feel anything at all in your tongue?

                          My tongue can't move but boy do I feel pain when my teeth clamp down hard on it 😲 😘
                          Yes, I can still feel my teeth and also the roof of my mouth when I move my tongue around… but it feels far from normal and on the way to being numb. Been like it for a couple of weeks. Feels a bit like when dental anaesthetic is wearing off, and also a bit like the temporary feeling I had when I was taking Teglutik orally. (As you can tell it’s difficult to describe!)
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                            #14
                            Originally posted by PeterPan View Post
                            As you can tell it’s difficult to describe!
                            I think you described it pretty well 👍

                            That's how mine is (I think) except for a 'numb' feeling - being a muscle, my tongue has lost all of its tone and is now just a useless lump of dead muscle sitting there, bit like myself really 🤣🤣 😘
                            ​Diagnosed 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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                              #15
                              I can still feel pain in my tongue but since wearing the lower gum shield I don't bite my tongue anymore. 👍😁🤗😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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