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    Please help

    Hello my name is Sarah and I am in a terrible state.

    Last week I noticed I had a tingly sensation on the side of my tongue. When I looked I could see it twitch in the same spot. I am now terrified that I have bulbar onset mnd. I have seen my doctor who is unconcerned and said it's anxiety. I do suffer from health anxiety and I have had twitches all over my body before, which I have previously worried about, but managed to accept it was ok. That was a few years ago. I have been all over the internet looking up tongue twitching, I emailed and spoke to the helpline on here and everyone is saying it's highly unlikely to be what I am fearing and that I would have other symptoms. Since then I have started checking my tongue, looking for signs of atrophy, thinking about swallowing and my speech. Noone has said my speech is off, but I have read on here people who say they had a hoarse voice and mine feels a bit hoarse. I am 51 and so feel that my age puts me at risk too.

    I suppose I want someone to tell me that I can believe this isn't bulbar onset mnd and that my doctor is probably correct when she says it's part of my anxiety and the twitch is no different to an eye twitch? My mum was very recently diagnosed with lung cancer which I was very upset about, but thought I had been dealing with it ok.

    If anyone can offer me any words of advice I would really appreciate it.
    Thank you
    Sarah

    #2
    Please be honest with me - I have just read back through and I am wondering if I should be posting on here at all.

    Comment


      #3
      Sarah, your MND does effect various things. Swallowing can be difficult and lots drooling saliva. Also you get pins needles sensitive acts in my case all down my left arm. I have no speech anymore and totally lost it after formally diagnosed 3yrs later.
      You find out all you need know on these post.
      Best wishes John

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        #4
        My MND? I haven't been told I have it. I am scared that the twitch on my tongue means I have it.

        Comment


          #5
          Sarah, please believe your doctor - twitches on their own mean nothing, diddly squat, and everybody twitches. Anxiety exacerbates twiching too.

          Mind yourself.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Thank you for taking the time to reply Ellie. I was starting to accept that since I had twitching on my tongue with no other symptoms, that maybe I was ok. Then I remember that I keep feeling drool on corner of mouth and that I sometimes get a bit hoarse. Could this just be the anxiety?

            Comment


              #7
              Hello Sarah,

              I am sorry you feel so scared and anxious. I am no expert on bulbar onset as my mnd is limb onset but nothing I have seen or read sounds like what you're describing. As Ellie has said everyone twitches sometimes.

              If your doctor is unconcerned then I would take notice of her. For your own peace of mind you could talk to her about how anxious you feel at the moment.

              Take care,
              Love Debbie x

              Comment


                #8
                Because you examine yourself so often, note every tiny imperfection, then attribute it to a terminal illness does seem to reflect your heightened state of anxiety, yes.

                Sarah, I'm aware these are strange and worring times for everyone - even usually calm people are finding they're becoming anxious, so I can't imagine how unsettling and difficult it is for someone with underlying anxieties. The good news is there are many online mental health tools available, ranging from the NHS to Ruby Wax's 'Frazzled Cafe' - you could check out a few sites and remember that your mental health is equally as important as your physical health.

                Be kind to yourself!

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Thank you for your reassurance Debbie, it is very kind of you.

                  Sarah x

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                    #10
                    Thank you Ellie. I have had cbt in the past and will get in touch with the therapist again. My husband thinks that this has come on because my Mum was diagnosed with Stage 3b Lung Cancer a few weeks ago. Of course with the lockdown I can't go and see her or my Dad, which is hard. I was coping with it all really well until my tongue started twitching and I googled. I will definitely check-out the Ruby Wax site - thank you again. x

                    Comment


                      #11
                      I do hope you can accept that your symptoms are unlikely to be MND. The health of your Mum must be difficult to cope with, even more so in the current lockdown which can’t but impact on your anxiety levels. More CBT is certainly worth taking if you can access it.

                      Comment


                        #12
                        Thank you Miranda. I will try to work on things and also look at ways to stay off the internet for a while.

                        Sarah x

                        Comment


                          #13
                          Hi Sarah,

                          Sorry to hear of your worries, I was diagnosed with Bulbar onset 16 months ago but if it’s any help I’ve never had tongue twitches despite the fact my tongue has shrunk dramatically as predicted, I’ve virtually lost the ability to speak and swallow, now use a feed tube instead. Only twitches I’ve had is in my chin/jaw and a few in legs and arms but I’m still physically ok and active.
                          I think your GP is probably right you don’t have enough symptoms really to have Bulbar MND.

                          Regards

                          David

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