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Bulbar symptoms and clean EMG

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    Bulbar symptoms and clean EMG

    Hi all. 30M from Ireland. Started getting symptoms 3m ago. My tongue has shrunk in size/volume by approx 30% and I am having difficulty swallowing liquids. I have constant twitching in my limbs 24/7.I have had 2 EMGs and they both came back with only seeing FPs.
    my question from experiences is EMG accurate in detecting abnormalities in bulbar region? Many thanks to everyone on this forum and upmost respect to all battling this disease.

    #2
    Oliveroldc Hi there.

    May I ask: who did your EMGs and which Neurologist(s) have you seen - is it that you don't rate them or trust them? Thanks.
    ​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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      #3
      Ellie I had the EMGs done by 2 different neurophysiologists in Dublin. Dr Sean Connolly(Vincents) and Dr Fiona Molloy (Beaumount)

      It's not so much as trusting the neurologists as the actual test itself. I had read that it was not very accurate for bulbar symptoms?

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        #4
        And the Neurologists? A diagnosis of ALS, whether bulbar or other area of onset, is not made on the basis of an EMG alone.
        ​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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          #5
          I was seen by Prof Niall Tubridy(Vincents)
          ok, I'm in limbo at the moment my swallowing and tongue are getting worse but the tests are negative.... I dunno

          Comment


            #6
            Originally posted by Oliveroldc View Post
            I was seen by Prof Niall Tubridy
            I know him well.

            And you've no relevant medical history?
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Recent medical history is that I had myositis early last year due to a bad reaction to medication. That cleared up though started twitching in October and my tongue wasting started around that time.
              I have had the UMN clinical test done(reflexes strengthetc) all were fine.

              Was sent for initial EMG which done on my legs and arms. Only FPs seen

              Had a second opinion EMG done in January on tongue and jaw and shoulder.Only FPs seen

              I don't have any other medical history. Muscle wasting and swallowing are my chief issues.

              Comment


                #8
                Originally posted by Oliveroldc View Post
                Had a second opinion EMG done in January on tongue and jaw and shoulder.Only FPs seen
                Sonds like your Get Out Of Jail Free card.

                2nd opinion in Beaumont or Vincent's?

                And, as you know, myositis can cause muscle wastage.

                You've been cleared of having ALS and I'm sure you've been told by the medical experts that you can scratch it off your list.
                ​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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                  #9
                  2nd opinion was in Beaumount

                  I wasn't told I didn't have MND. Only told that tests didn't find anything but ye your right I am back to the drawing board.

                  Thank you for your replies

                  Comment


                    #10
                    Originally posted by Oliveroldc View Post
                    2nd opinion was in Beaumount
                    Beaumont is the National MND Centre. If your EMG on your symptomatic bulbar region showed even a hint of ALS, you would have had an ALS diagnosis from Prof Hardiman.
                    ​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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                      #11
                      Didn't get to see her. Waiting lists like 1 year, but ye you are right I agree.

                      Comment


                        #12
                        Originally posted by Oliveroldc View Post
                        Waiting lists like 1 year,
                        Nope, she usually sees people with suspected ALS within 2-3 weeks - she saw me in just under 2 weeks on referral from Tubridy.
                        ​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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                          #13
                          I suppose that bodes well for me also that I can't get an app with her.

                          Thanks Ellie, my worry was that Tubridy was very quick with me and his expertise is MS which is why I went for a separate EMG in Beaumount.

                          Comment


                            #14
                            Originally posted by Oliveroldc View Post
                            my worry was that Tubridy was very quick with me and his expertise is MS which is why I went for a separate EMG in Beaumount.
                            It was Tubridy who first mentioned that ALS was 'on the table' during my diagnostic process, and was further suspected by Connolly who did my EMG. Tubridy referred me to Hardiman, who saw me 9 days later - it was just a formality really. I was then under the joint care of Tubridy and Hardiman.

                            Tubridy has seen many cases of ALS in his 30yr medical career, he's a top rate Neurologist (Professor).
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Thanks for the insight Ellie. I was unaware.
                              Will try to get to bottom of my issues but reassuring I have seen a quality care team.

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