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    Working diagnosis

    My 78 year old husband has been given a 'working' diagnosis of MND with bulbar predominance. He can no longer speak and has difficulty swallowing. He has no problems with his limbs and all MRI and Nerve Conduction test confirm all nerves are working correctly. He had a peg inserted last December. The problem with his speech started in May 2021 immediately after having prolonged and difficult dental surgery. It has been suggested to us that the dental problems/trauma may have triggered MND. Has anybody else suggested that? If so why are no warnings given?
    Because of the dental surgery and the loss of teeth which resulted in difficulty chewing food, we attributed the speech problems to the absence of three teeth and it was nearly a year before he saw first an ENT consultant and then a neurologist who after tests advised he did not have MND. A speech therapist performed a fluoroscopy shortly after and she did not accept that diagnosis and asked for an urgent appointment with a neurologist. That appointment took place nearly a year after we first noticed a speech problem. He thought MND on a balance of probabilities. My husband then saw a Neurologist at the NNH who did think he had MND but suggested the MRI tests and the Nerve Conduction tests be repeated. They were and again showed no problems. The latest diagnosis came in December when my husband saw the director of our local MND clinic.
    My husband also had a very dramatic response to taking riluzole with a rash that covered most of his lower body. Botox injections so far have failed to suppress the problem with saliva. From my observations I would describe my husband's principal problem as being a paralysed tongue now with considerable atrophy so that he cannot easily move food to the back of his mouth, compounded with the saliva. Is this normal?
    I'm sorry this is so long but I cannot get out of my mind the coincidence of the dental work and the onset of problems in the very area in which the dentist was working and using considerable force in extracting a broken tooth.

    Dear Margaret,

    I can understand your concern that the dental procedures may have triggered the onset of Motor Neurone Disease (MND).

    Whilst it is true to say that trauma can be a risk factor for MND, the disease is not triggered by one risk factor alone. It is thought that people have to come into contact with several risk factors before the balance is tipped and MND will be triggered in susceptible people.

    It could be that the trauma with the dental procedure was a catalyst and was the final risk factor needed to trigger MND. As far as I am aware there has been no research to suggest that dental treatment could trigger MND, but the whole experience sounded very traumatic.

    If you would like information about the risk factors thought to to contribute to MND, please do let us know at MND Connect and we will be able to either post or email further information to you.

    With Bulbar onset MND, it would be expected that the tongue would atrophy causing the symptoms you have described above.

    You mention that he now has a feeding tube, has he also been given or advised about an alternative form of communication such as an aid?

    If you have any questions Margaret, or you would like support for yourself and your husband, please do not hesitate to contact the helpline team MND Connect either by calling our freephone number 0808 802 6262 or by email to [email protected]

    We are here to support you both.

    Kind regards
    MND Connect
    MND Connect
    Contact us on 0808 802 6262 or at [email protected]


      Hi Margaret Taylor I can't comment on the trauma aspect in terms if the dental treatment. My dad first had symptoms of als bulbar onset in May 20 and was diagnosed may 21.

      He has no speech, very poor swallow and issues with muscle weakness from neck to core muscles and more recently to his arms. He has had significant issues with mucus that we have not been able ri resolve, or improve, despite various medications and recently hyoscine patches. I'm not sure what medications have been explored for your husband but assume the staples of glycopyronium bromide and carbocisteine have been trialled? Dad has been referred to discuss botox but no appointment yet. Have you tried other avenues such and pineapple juice and increasing hydration? Hope you find something that works


        Margaret Taylor A warm welcome to the forum, Margaret, sorry to hear of your husband's tentative diagnosis.

        I wonder if you recall hearing the term Pseudobulbar Palsy during his diagnostic process? It involves only upper motor neurons.

        Do you know if he had a needle EMG of his tongue? You refer to Nerve Conduction Study but I hope/think you mean the EMG.

        Controlling saliva production can be a real trial and error experience for many people, sometimes needing two types of meds or interventions, so don't despair (just yet) xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


          There was discussion of pseudo bulbar palsy but that was discounted as he has not had inappropriate emotional responses.
          I don't know if he had an EMG of his tongue but I don't think so. (He's a bit secretive) Can that make a difference? Is it something he should ask about?