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    Up coming appointment

    Hello to all

    I had a previous post which understandably wasn’t suitable, and I showed a lack of empathy which is very unlike me. For this I sincerely apologise.

    I have had symptoms since middle of last year and 4 EMG’s the last one showed some changes where all the other ones have been ok.

    I won’t discuss symptoms, but sadly things seem to get worse on a daily basis and I’m worried.

    I have an appointment with a specialist in the field tomorrow NHS and I’m trying to make sure I write a timeline of everything. If anyone has any tips I’d be really grateful.

    The previous neurologists I’ve seen privately early on both knew each other and made me feel really stupid to be honest.

    Thank you for reading and I do think of you all.

    Kind Regards
    Helen

    ps a big thank you Peter for sending me the link to start a new topic.


    #2
    i have a lot of confidence in both of the clinic leads at sheffield
    Best

    Robin

    Diagnosed 05/2017 Familial ALS Limb onset

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      #3
      Thank you Robin

      Appreciate it

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        #4
        Helen you won't need a time line. They will know the rule out tests that have been done. They will more than likely do a physical exam re strength and reflexes. I had 2 very typical mnd physical tests by the doagnosing neurologist.


        Good luck 👍
        Diagnosed May 2021 bulbar onset als.

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          #5
          Shelly 😊

          Huge thanks for all your support.

          yes, I’ll let them get on with it rather than bamboozle them with times/dates etc. Last time they did reflexes I nearly kicked them out the window. If I remember rightly though the babinski’s was all good.

          Thanks again

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            #6
            Hate posting here again but feel so lonely.

            Symptoms are worse and I’ve been refered to mnd Clinic. I have ENT on 30th and breathing tests being bought forward as per GP.

            so sad to read about Mary C

            Best wishes to you all

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              #7
              Helen212 - I hope you get more clarity soon. It's horrible being in limbo with scary symptoms xx
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                #8
                Originally posted by Helen212 View Post
                Symptoms are worse and I’ve been refered to mnd Clinic.

                Which MND Clinic this time or back to Sheffield again?
                ​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
                  Sorry Ellie?

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                    #10
                    Thank you Tiny Lady it is indeed
                    thank you xx

                    Comment


                      #11
                      Originally posted by Helen212 View Post
                      Sorry Ellie?
                      I mean which MND Clinic is your referral to and any idea how long you'll have to wait?
                      ​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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                        #12
                        Guess what

                        Even Proffesor’s make mistakes 😯

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                          #13
                          Have you had a diagnosis?

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                            #14
                            No

                            things worsening quickly sent video to last mnd Dr, gross one of my tongue and he’s seeing me early July.

                            How are you

                            Comment


                              #15
                              Helen212 how are you? I have to say I have met some amazing people on this forum. And you are one of them xx. Like minded people so boosting for the soul x

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