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    Dry cracked Tongue

    Hi All, anyone else experienced deep cracks on the tongue.I have a horrible dry mouth ( worse at night) and not taking much medication so wondering if that’s due to salivary glands being affected by MND.Tried a prescribed course of Nystan but no improvement .Now need blood test and a swab to be done.
    Just wondering if anybody else has had a similar problem?
    Best wishes
    Mary

    #2
    Stephens tongue isn't dry but has strange lines on it. I don't know if it's to do with his mask.

    Comment


      #3
      Mary that sounds very painful. Have you been seen by your GP or community nurses?

      I hope that it heals quickly
      love Sarah xx

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        #4
        Hi Sarah .I contacted GP today and sent photo to him.As a result next step is blood tests and swab to be done next week.
        I looked at it in a magnifying mirror and made me concerned as deep cracks .
        I don’t wear a NIV mask ( yet)
        Best wishes
        Mary

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          #5
          Presumably you're not talking about muscle wastage, my tongue is shrunken on the sides, but not deep cracks I don't think. Hope Gp can help x
          Diagnosed July 2020, ALS bulbar onset.

          Comment


            #6
            Is your tongue sore, Mary? You may need to brush the tongue and/or do a thorough swish with mouthwash etc. to make sure there's no debris lurking in the cracks which would only compound your problem but, if the tongue is sore, that won't be pleasant...

            The fact that your mouth is dehydrated could have a role to play in the issue and the blood tests will show any vitamin or mineral deficiency, which can be easily rectified, so hopefully those test results will come back soon.

            Love Ellie.
            ​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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              #7
              Hi Mary. I too have a dry cracked tongue. Like you I have a dry mouth at night, and was prescribed Nystan drops and Daktarin gel which haven’t really helped. I’ve also tried various mouthwashes. I haven’t had any further tests yet, and I’ve had it so long now I just think of it as part of the Bulbar symptoms. Let us know how your tests go. Lizzie x

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                #8
                I wear a jaw brace each night and no more dry mouth
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Hi Lizzie,
                  My tongue isn’t sore just cracked in several places.I use biotene dry mouth toothpaste, do mouthwashes, had a course of nystatin and the problem remains.
                  The dry mouth persists ..It’s ok in the day but at night if I am restless I reach for sips of water and use biotene artificial saliva gel.It’s gives temporary relief.
                  I also gag a lot when brushing my teeth and at the dentist.
                  Oh well plod on...don’t fancy a jaw brace yet.

                  Best wishes
                  Mary

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                    #10
                    It's just a velcro strap
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      Matthew, where did you get your jaw brace? What’s it like? x

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                        #12
                        Whythenshaw Hospital. Like a bandage with velcro fastenings. Do it tight and it stays on all through the night. 😀x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Lizzie Have a look for 'chin straps for snoring' on the web and you'll get the idea. xx
                          ​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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                            #14
                            Still got the cracked tongue..in fact it’s looking worse.scary.The swab and blood tests came back as normal so no clues there.

                            Its not sore but scary to look at.Presume it’s due to dry mouth and MND in tongue ..
                            It doesn’t seem to be a problem other people with MND seem to have???

                            I use a mouthwash..Biotene for dry mouth and biotene dry mouth toothpaste.Did a course of nystatin but no improvement
                            Speech now getting affected too
                            Oh well just have to accept it and don’t stick my tongue out at anyone 😛
                            Best wishes
                            Mary

                            Comment


                              #15
                              Sorry to hear that Mary, I'm glad it's not sore.

                              You don't strike me as an avid chewing gum chewer but, if and only if you can do so safely, I wonder if chewing a sugar-free gum might improve things? xx
                              ​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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