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Found out about my mnd on patient access app.

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    Found out about my mnd on patient access app.

    My name's Steve, I developed foot drop in November of last year went to doctors who referred me to neuro surgeon as I have an ongoing issue with L2 and L3 spine degeneration. MRI came back with slight change but not needing surgery.. Neuro referred me back to docs suggesting emg test. Had emg test in early June and didn't here anything from anybody till the 29th June when the gp receptionist phoned me to say I had a phone call booked for the next morning to discuss a letter. Being curious I went online onto my patient access app to see if there was anything to read. Under Medical problems I found out I'd been diagnosed as having motor neurone disease. Hit me and my partner like a tonne of bricks, I googled it then stopped reading anything online and contacted a number from the mnda I was lucky enough to get to speak to Roger, first thing he did was slow me down and calm me. He advised me to ask certain questions when I spoke to the doctor the next morning. I had the phone call with a trainee doctor who I did not know who read the letter out to me but couldn't answer my questions. This is now being looked into by MNDA and Pals. Today I had a appointment with the specialist at the hospital who has provisionally told me that I have limb onset als, I need to have a MRI of the spine plus me head. We have a nurse coming to see us next week. I am worried about my partner but I hope that we can get support as my journey carrys on. All the best for now

    #2
    Stevedp oh what a way to find out! Its an awful shock that takes time to settle. But you have joined a fantastic forum. You can ask anything on here and I mean anything.

    Firstly the mnd nurse will come out and talk you through a lot of things. There are a lot of different departments that will be involved with your care. I've got about 12. the nurse brings an mnda pack that is a very useful book.

    In the meantime maybe allow the shock to settle. I'm sorry for you having to be here but we will help. X
    Diagnosed May 2021 bulbar onset als.

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      #3
      Stevedp what a way to end up here!! I really hope they can support you well and that you find this forum helpful.

      We like to post about anything and everything. Plenty of support, information and laughter here. So never feel alone 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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        #4
        Stevedp that must have been an awful shock for you both. So sorry you heard it like that. You will get lots of support from this forum. Don’t be afraid to ask anything. It’s very daunting at first but in time and with support from professionals, family and friends you will come to terms with it all. My husband is in his 5th year and still walking. Wishing you all the best and don’t forget we are all here for you.xx

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          #5
          Stevedp A warm welcome to the forum, Steve. I know making the first post can be pretty daunting.

          What a shocking way to find out you've an MND then, to add insult to injury, 'someone' thought this devasting news should be read out by an ill-equipped junior doctor , unable to answer any of your questions 😡

          Thank goodness you saw the number for the MNDA helpline, thank goodness for Roger 👏👏

          Love Ellie xx
          ​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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            #6
            A warm welcome to the forum Stevedp. I'm so sorry for your diagnosis and for the shocking way you found out.

            The forum is a great source for friendship and support.

            Love Debbie x

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              #7
              Stevedp Like everyone else, i abhor the careless way you found out. I have been searching my patient history - i'm now wondering if i had symptoms in the early 2000s. Well done for finding us, i waited over 6 months before i was told of any support services. Got to wash up now - just about able to still do that!
              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                #8
                Hi Steve
                I wont go over what everyone has said about the way you found out but here you will be with friends who will give you shed loads of advice and information. hope you will join in and be part of the team.

                Love and hugs
                Denise xxx
                when i can think of something profound i will update this.

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                  #9
                  Thank you

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                    #10
                    Welcome to the forum Stevedp.
                    That is truly shocking, what a way to find out and then a doctor who has no expertise in MND! Ellie put my thoughts into words better than I can!
                    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                      #11
                      I am equally shocked to read your post, but welcome, and do hope the help you receive improves dramatically from now on x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #12
                        Stevedp would echo the above comments. The diagnosis is a lot to take in. We are all different in our experiences and progression, do try to keep positive. Personally, I was diagnosed over 10 years ago and still doing OK.

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                          #13
                          Welcome to the forum no one wants to be in xxx
                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                          Respiratory and blood gases still within normal range.

                          No speech but sense of humour still fully intact.

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