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    My first post

    I am really confused at the moment and was wondering if you could help or advise.
    I started out of the blue with a limp last October 2021 and developed foot drop in the December 2021.
    In January 2022 I went to see my GP who referred me to MSK via NHS - which took months.

    We have Bupa so I went to see a physiotherapist in Leeds who referred me for a MRI of spine and nerve study/EMG - the MRI came back clear but the nerve study showed a problem with my spine which the neurosurgeon said was not correct and he would not operate.
    The time of tests to results took 11 weeks.

    I paid privately for physio and religiously did all the exercises.

    In June 2022 went to see a chiropractor as my walking and balance worsened - x ray of spine was ok and strangely whilst in traction for the first time my foot could move although this didn't happen again.

    I was gradually getting worse, falling, off balance and unable to climb stairs, struggling sit to stand etc.

    I asked to see a neurologist via Bupa and he sent me for MRI of brain, neck, spine - all came back clear.
    He gave another examination an noted very brisk reflexes and asked if I had twitching of legs which I do and have video of them.
    He mentioned MND/ALS.

    I have gradually got worse and 3rd November went to A&E after suffering multiple falls and losing the ability to walk far.
    I was admitted as a patient and spent 15 days there undergoing tests, EMG/Nerve study and blood tests done.
    I was discharged from Pinderfields Hospital Wakefield Friday 18th November without a discharge letter.
    I have been trying to get information about the tests done at the hospital and I am being told phone GP.
    Several calls later and being told different things I get a call from GP saying I may or may not have MND - it's borderline.
    My upper body seems ok.
    I said I cannot carry on like this, my walking is getting worse and my "good leg" can no longer support me and when would I get to know a diagnosis to which he replied he didn't know.
    I was wondering if this is common practice - I don't know what to do, my walking is really bad - I have bought a walker which helps a little but how long does it take to get a yes or no normally?
    My neurologist does not return my calls.
    Last edited by michelleroberts; 29 November 2022, 11:04.

    Hiya michelleroberts My diagnostic path took 6 months, which included me having scans done through private insurance.
    If MND is a possibility that is still being considered, then only your Neurologist can talk to you about that.
    Your GP will only know what other specialists have told them.
    Please appreciate that we cannot give medical advice on this forum - you must get on to your Neurologist.
    Best of luck.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.


      michelleroberts it can take a while for all test to be analysed and I’m sure you will get a follow up appointment very soon. Have you tried ringing the Neurologists secretary for advice. Best of luck to you too.xx


        Originally posted by michelleroberts View Post
        I get a call from GP saying I may or may not have MND - it's borderline. ​
        To be told that with no follow on plan or appointment is appalling.

        Push for a referral to Leeds who see suspected MND cases. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Not sure how to respond to individual replies- yes I have tried phoning secretary who is very polite and promises to get back to me but doesn’t .
          I am going to ask for a referral to Leeds.
          Thank you for replying xx


            michelleroberts I would put in a complaint. I've had to complain at every stage. Like you I had to chase my test results. Send emails, it's a waste of time chasing doctors secretaries.