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    Hi and I am confused/scared

    Hi, thanks for letting me join your group. I have been reading your inspirational and heartbreaking stories; Here is mine:

    I am a 49 year old male, who used to love playing rugby/cricket/cycling etc. Two years (april 2017) I finished a park run and noticed my left leg felt weird. I had sciatic pain and lower back pain. Throughout the summer my left leg was out of sync when running.

    I went overseas with work and had private healthcare, so had a back scan showing compressed nerve, had conventional treatment but still left leg wouldn't work properly. Had a back operation (feb 2018)of to relieve compression but this did not work.

    Fast forward to September 2019 and back in UK. Leg getting worse and using a stick. Had brain and total spine scan (december 2018) all clear nothing showing up. EMG tests in April 2019, all normal, numerous blood tests, all normal. Lumbar puncture all normal. Still waiting for evoked visual and sensory results.

    I have brisk reflexes and positive babinski and hoffmans.

    Now I can hardy walk (been using crutches for 6 months) my left leg feels so heavy and my right leg is joining the party too.

    Neurologist has now referred me to Prof Kevin Talbot at Oxford who I believe is a MND expert.

    As you can imagine this has terrified me. My confusion is that all tests are clear and nothing to indicate why I can barely walk and I am scared of the unknown.

    #2
    Hi Gloslad and welcome to the forum.

    It is understandable that you are feeling confused and scared. I think most, if not all, of us on here have felt like that at times on our MND journey.

    Have any of the health professionals you've seen actually mentioned the possibility of your having MND? Or are you making the assumption because of the referral to Prof Kevin Talbot? Have you been given any indication of how long you might have to wait for an appointment.

    I'm afraid that I can't comment on your symptoms as I simply don't know enough about MND. However, I'm sure others will respond soon.

    This forum is an excellent source of support and information about MND.

    Best wishes,
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #3
      Hi, thanks for the response. I saw neuro doc last week and he said I am not following familiar patterns of other ailments so would like to refer me onwards. Maybe my mind has gone into overdrive and I am over thinking things. I have no other symptoms apart from legs that do not function, I think he called is tetra-spasticity as he felt stiffness in my left arm too.

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        #4
        Hi Gloslad, we all cannot say that you have MND or not. But the tests you've had sound to a non expert that you don't have MND. I don't know whether or not signs are in our brains and spinal fluid before symptoms start or are always evident when symptoms like you descibe are happening. But I offer my personal experience. I had a brain MRI at a time that I was walking with my two walking poles (that I'd used when hill walking). My MRI showed changes.

        There are other neurological conditions that effect mobility. So however hard it is please try to wait until you see the well qualified neurologist before you write yourself off. I hope that your symptoms turn out to be something that can be treated. Take care, Lynne
        Last edited by Lynne K; 17 June 2019, 12:30.
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
        I'm staying positive and taking each day as it comes.

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          #5
          Thanks Lynne, I appreciate the reply. The worst part is the not knowing and the waiting, which looking through different threads is a common occurrence. It's been 2 years of gradual decline, from being someone who used to do all sorts to someone who shuffles around and without crutches or holding on to walls would fall flat on his @rse.

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            #6
            Yea, Gloslad. I was similarly slowly losing my ballance for 4 years. I too, like lots of other people on this forum, had an active life, walking hills and mountain scrambling (for those with no hill walking jargon experience scrambling is climbing up the rocky tops of mountains with your hands and feet, the hardest of which are just a bit easier than climbing). It was dreadfully hard for years not being able to get to the top of mountains any more. But mostly I've come to terms with that. I'm still getting around at home with a walking aid but recently started using a wheelchair outside. Lynne
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

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              #7
              it's just case of waiting for my appointment now and go from there. I am lucky in that my employer lets me work from home 4 days a week and I can still drive and do not have any issues with the foot pedals.

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                #8
                Sounds good about working from home and that you can still drive. Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  Hi Glos,

                  Your symptoms don't really fit ALS as you don't appear to have lower motor neuron signs and had normal EMG.

                  Were the spasticity, Hoffman's & Babinski the only clinical signs the Neuro found?

                  It's good that you're seeing Talbot - have you long to wait?

                  Love Ellie.
                  Last edited by Ellie; 17 June 2019, 17:39.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Hi Gloslad

                    I can understand you’re worried.

                    Strangely your early symptoms mimic mine: left sciatic pain after a long hike, initially thought to be an old disc injury coming back, but spinal MRI was normal.

                    BUT….it is usually not a good idea to try to crossmatch symptoms prior to diagnosis. And the very strange thing you describe – though this could be extremely good news – is that your EMG tests were normal.

                    As Ellie says, it’s very good you’ve been referred to Kevin Talbot. He and his clinical neurosciences group at the JR are absolutely world class, not just on MND either.

                    Good luck!

                    Doug

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                      #11
                      Hi Ellie, yes they are but I am still waiting for sensory and visual evoked results, my eyes are fine and no other issues. Still waiting for appointment date at Oxford.

                      I just want a doc to say 'this is what's wrong and this is how we can fix it' although I appreciate it will not be that simple.

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                        #12
                        oh I forgot to mention clonus in the ankles too

                        Comment


                          #13
                          Did the Neuro replicate the clonus in exam?

                          Yeah, they are all upper motor neuron signs but don't necessarily mean you have an MND - and to be diagnosed with ALS, you need lower motor neuron involvement too, and you're negative for that, which is good.

                          Best wishes for your other test results.

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

                          Comment


                            #14
                            hi, yes he did.

                            Thank you all for your comments, they have been really helpful

                            Comment


                              #15
                              just an quick update. My sensory and visual evoked results are all normal. So the only symptoms i have are:

                              I can hardly walk ( i use crutches)
                              positive babinski and hoffmans

                              my wife is concerned about primary lateral sclerosis.

                              Comment

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