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Weird speech

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    Weird speech

    Back to Christmas Day I became unwell very quickly to the point I went to A and E. I had a tight chest and shaking all over. Very adgitated. Twitches in body. Pins and needles, cramps. Was told probably flu as my blood cell count was high.
    I became very weak and couldn’t turn key in door which was a concern. My right arm very clumsy. Alarm bells started and subsequently thinking of other odd happenings previous month. Difficulty with certain words. Croaky voice and very phlegm. Out of breath walking up stairs.
    My mother and grandmother both had MS so was/is a constant worry that I may get it. But I’d reach 53 years of age and kept myself physically fit. Ran the Great North Run under 2 hours in September and went to gym 4 times a week. So now being a shadow of myself decided to get seen by a neurologist. I’ve seen several over the years thinking I might have MS. But all findings were negative. My neurologist I saw this time in January
    again dismissed my symptoms but I wanted the nerve testing done as I now was thinking more like MND not MS and I didn’t believe him. The tests came back fine which I was relieved with .
    I felt like I’d had a nervous breakdown and put my worsening speech down to that. So to try and get on with life I’ve been seeing a health anxiety therapist. Got mediations /mindful apps. Got books etc....
    My speech is getting worse and the croakyness and phlegm’s terrible. I sometimes have a horrid taste. I sometimes have a lisp, I sometimes mispronounce.
    My tongue is sore and tingles and looks red at top and side. My left side of my mouth sometimes feels dropped like a stroke. My lips tingle too.
    Clearly at this very strange and uncertain time of Coronavirus I appreciate I’m not an urgent case so won’t get to see anyone medical for sometime, so I am asking if anybody else on here has had any of my symptoms.

    Apologies for the long introduction.

    Hope you are all keeping as well as you can xx

    Hi Paula,

    Sorry you’re so anxious at a time when the whole world is on edge, it can’t be easy for you.
    Originally posted by Paula View Post
    So…. decided to get seen by a neurologist. I’ve seen several over the years thinking I might have MS.
    What symptoms have you had “over the years” which prompted you to see several neurologists? It’s helpful to get the big picture.

    Take care.

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


      Thanks for replying Ellie, Clumsiness and muscle twitches and fatigue about 7 years ago and was then put in the chronic fatigue with fibromyalgia diagnosis.
      My new symptoms started Nov/Dec 2019. I feel like I have to concentrate to speak properly and if I’m relaxed get tongue tide and words are all over. Then sometimes can’t actually get the word out... my lip/mouth to the left feels sometimes like it’s drooped .
      The croaky sound comes and goes, Constantly coughing to clear voice.

      Thanks 🙏 Paula


        I tend to agree with your neurologist(s) that your symptoms don’t tie in with MND nor do the clear nerve tests. The speech issues you describe - lisp, mispronunciation - also don’t tie in with how MND manifests itself in speech.

        If you’re due any follow up appointments, maybe they can be done by video or phone, not ideal but better than nothing in the circumstances.

        Good luck in getting to the cause of your issues and hopefully your therapist can reduce your anxiety.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Morning, the nerve tests weren’t done on my face/tongue only on arms and legs, which is why I’m still concerned. Apart from the mispronunciations and lisp are the other symptoms correct ?


            It doesn’t matter that you didn’t have your tongue etc tested - by the time a person with ALS/MND notices muscle failure, there is widespread denervation which is picked up on the EMG test and you had your test done recently (within the last few months) You said you “couldn’t turn key in door” and fortunately your tests were normal, which is why your neurologist wasn’t concerned about ALS/MND.

            The other symptoms you listed could be many things, including reflux, so you should ask your GP about them.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


              Hi Paula,

              If its any help my first signs (20 months ago) were difficulty speaking, not so much slurred or bad pronunciation, it was more about the effort and concentration I seemed to have to be putting into just moving my jaw to put words out. Even though I mentioned it to my wife at the time she couldn’t detect any difference in my speech. I did have the nerve tests twice, 6 months apart on face, arms and legs and it was after the results of the second one that the neurologist phoned me and confirmed there was a deterioration and it was MND.

              My speech did then slowly become slurred and is now almost impossible to be understood. I often have the croaky voice and phlegm that you mention but I did establish the croaky voice is only when I can detect phlegm around my voice box and normally once I manage to cough it up the voice becomes clearer. I did have various cramps and twitches as this all started.

              My neurologist did ask me what I thought it was in the early stages, having googled the symptoms I said MND or Parkingsons, he did say then either were possible but he needed to wait 6 months and do a second nerve test to confirm if and what it was, so I think you might need to have a second Nerve test at some point.

              Hope that is of some help to you.




                Hi David

                Thank you for telling me your first symptoms and story. As much as I’d rather not have similar symptoms I take comfort that I’m not going mad. My husband too says he can’t really see any difference but he has noticed croaky voice and now my kids are correcting my confused words . Waiting to be contacted from Neurologist is testing but these are strange times.

                Thanks again and hoping you stay as good as you possibly can for as long as you can.