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A year of tests & horror so far

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    A year of tests & horror so far

    Morning all. I'm new here but I've been dealing with a long period of testing where I've seen more machines and EMG needles than I knew existed. Umpteen normal tests and two sets of genetic tests and I'm now looking down the barrel of my final diagnosis on Tuesday.
    I'm pretty sure where I stand as everything fits latest Bulbar Onset MND / ALS diagnosis by general neuro. Symptoms have been clear on voice since August 2020.
    MNDA have been great so far. Palliative care and SALT all in place. More doctors than I can remember, and I've had epilepsy for 30 years.
    I even have a plan of what I need to do, sort of.
    Then I remember I have three teenage daughters and go to pieces. How does one grieve for a future one will never see? (rhet)
    I'll focus on Tuesday and how I'll manage to speak at 4pm.๐Ÿค Just thought I'd say hello and hope you and your families feel today is a good day.๐Ÿ™

    #2
    Hi and welcome. I'm fairly new here too but every one is lovely and very helpful.

    I remember very well the tests and the waiting for the final answer. I can't make it any easier for you I'm afraid but what I found is that once I had my diagnosis and got over the initial shock I found it a lot easier to face up to the future challenges.

    However you feel now or on Tuesday just remember you're never in this alone and there is always hope and a friendly forum.

    keep your chin up

    Rich

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      #3
      MarsyasWeeps Welcome to the forum and wishing you well for Tuesday. I donโ€™t want to preempt anything, but I found that having a plan is really useful, with the aim of keeping one step ahead of likely needs. So well done! Hopefully it wonโ€™t be needed.
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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        #4
        Welcome. Been there, worn the t shirt and eaten the pie! Best group of people to be found anywhere on the www. Stay Strong ๐Ÿ’ช๐Ÿ˜โค๏ธ๐Ÿค—xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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          #5
          Simply, thank you all.

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            #6
            A warm welcome to the forum MarsyasWeeps

            Originally posted by MarsyasWeeps View Post
            I'm now looking down the barrel of my final diagnosis on Tuesday.
            Is this appointment with an MND Specialist?

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

            โ€‹

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              #7
              MarsyasWeeps welcome to the forum...writing down questions before appointments really does help.

              Take care ๐Ÿค—๐Ÿ˜˜
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                #8
                MarsyasWeeps thinking of you for next week. Itโ€™s good you have things in place already.Itโ€™s such a shock initially but it really does get that little bit easier in time. I am a carer for my husband who is in his 5th year since diagnosis. Still walking and talking with slight changes but on the whole doing well.
                This forum is the place to come when you feel you need to ask questions, cry, shout, and any other emotions that need venting.x

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                  #9
                  Originally posted by Piglet View Post
                  MarsyasWeeps thinking of you for next week. Itโ€™s good you have things in place already.Itโ€™s such a shock initially but it really does get that little bit easier in time. I am a carer for my husband who is in his 5th year since diagnosis. Still walking and talking with slight changes but on the whole doing well.
                  This forum is the place to come when you feel you need to ask questions, cry, shout, and any other emotions that need venting.x
                  reading about people who are years into a diagnosis is one of my favourite things and gives me the motivation to keep positive and as well as I can. It ain't over till its over x

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                    #10
                    MarsyasWeeps - thinking of you today x
                    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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                      #11
                      I'm new to this site and replying via my phone so please accept any typos.

                      Dispite months and moths of dealing with negative and jobworth people so many other organisations have been positive and supportive.

                      I've learnt to take a break from stress and tnen smile. Reducing stress levels is so important for our condition.

                      To take onboard that we are not unigue and that others are having similar in life issues is a relief.

                      Its not just about me it's about all of us regardless of a diagnosed illness.
                      Last edited by RP0521; 8 March 2022, 17:16.

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                        #12
                        MarsyasWeeps I hope yesterday provided certain answers and was not too traumatic. Big hugs.
                        Richard

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                          #13
                          I found it easier once diagnosed as I then knew where I stood.
                          this forum has a lot of advice and a lot of love from people who know what it is about.
                          It's all funny

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                            #14
                            I aim to be one of the longest survivors of MND. And being positive, even medication driven, helps the time lengthen, and ones enjoyment of the time to increase.
                            Mum died with MND in 1979 โ€“ My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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