Announcement

Collapse
No announcement yet.

Numb tongue

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Originally posted by matthew55 View Post
    I can still feel pain in my tongue
    So it's not numb - now it makes sense why you wear mouthguards, my little brain was confused 😏 xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

    Comment


      #17
      I never said my tongue was numb I said it's almost dead, as in doesn't move anymore. Gum shield is primarily in to save me breaking teeth or cracking enamel.? πŸ˜πŸ€—πŸ˜˜πŸ˜xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #18
        Originally posted by matthew55 View Post
        My tongue is almost dead but it started just being numb about a year ago.
        I obviously misunderstood what you meant by this.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

        Comment


          #19
          No worries it was numb at the start but that wore off. No harm, no foul. Peace. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #20
            It sounds a difficult thing to cope with Matthew.
            Keep strong
            Mary

            Comment


              #21
              It's just one more thing is all πŸ˜πŸ€—πŸ˜˜πŸ˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #22
                PeterPan I find that because I'm slow to try and swallow the Riluzole tablet it starts to disintegrate on my tongue, it then feels very slightly numb not for long.
                Different topic but I also felt nauseous and really out of sorts so stopped Riluzole for 6 days....just restarted.
                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


                  #23
                  Originally posted by LindaB View Post
                  Different topic but I also felt nauseous and really out of sorts so stopped Riluzole for 6 days....just restarted.
                  Did you feel any better off the Riluzole, Linda? xx

                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #24
                    Ellie yes I did....slightly regarding not feeling nauseous so ate better. However don't know if a connection but my breathing worse. I'm seeing respiratory team tomorrow.

                    Restarted Riluzole today so if I do feel the same symptoms I'll know it's cause.πŸ€”
                    Last edited by LindaB; 1 September 2021, 15:01.
                    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


                      #25
                      Damned if you do, damned if you don't... xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #26
                        After restarting the riluloze following a break due to feeling very sickly - today I felt really nauseous....to the point that even brushing my teeth made me gag. The reality is it may not be the medication but everything points to that. I'll let my mnd consultant know tomorrow. I want to take it but not if it erodes my quality of life...I imagine he might suggest taking another tablet to counteract nausea but do I gain enough from Riluzole to justify that?
                        #sigh πŸ€”πŸ˜’
                        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


                          #27
                          Originally posted by LindaB View Post
                          I imagine he might suggest taking another tablet to counteract nausea but do I gain enough from Riluzole to justify that?
                          Do you take a 'stomach liner' such as lansoprazole? IDK if it would make a difference but I'd be tempted to try that first before an antiemetic, which can be quite hardcore for permanent/frequent use.

                          In the grand scheme of things, if Riluzole had that effect on me, I'd stop taking it without a second thought. It's no panacea. xx

                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            #28
                            Stephen stopped taking his about 6 weeks ago. He's not so agitated. I'm sure it's the riluzol. He doesn't want to take it so I'm happy with that.
                            when i can think of something profound i will update this.

                            Comment


                              #29
                              I stopped ages ago and I feel great. Well as good as I can be. πŸ‘πŸ˜πŸ˜˜πŸ˜xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                              Comment


                                #30
                                No I'm not taking anything else just now...although the consultant might suggest.
                                I think you're right about Riluzole...no way I want to feel nauseous if I can avoid it. Thanks Ellie good to talk xx
                                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

                                Working...
                                X