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    #1

    Respiratory clinic

    So I'm doing the trip to have a gas test today. I'm rather stressed. It's not the test but visiting the unit that has left me feeling scared. I should've had the results from my lung function tests on the 9th of Feb. Oximetry wasn't done but was done 4 weeks ago. I've asked for the results but not received them yet. Then a lady calls re altering the appointment and says its for niv. I haven't been told this and was told it was a gas test.

    a bed that still isn't in place but delivered the 15th of Jan.

    I'm really loosing hope that my care is non existent. We made a formal complaint but have had no response.

    I wish they really knew what it feels like to be so scared x
    Diagnosed May 2021 bulbar onset als.
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    #2
    You poor lady. That is so sad. What dreadful care. I hope and pray that you get results and better care today. I found once I was referred to the MND team things began to happen quickly.
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes
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      #3
      Sorry to hear all of this Shelly, please stay strong, I am sure things will improve for you soon x

      James x
      Foxes Never Quit 💙
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        #4
        Originally posted by shelly21 View Post
        So I'm doing the trip to have a gas test today. I'm rather stressed. It's not the test but visiting the unit that has left me feeling scared. I should've had the results from my lung function tests on the 9th of Feb. Oximetry wasn't done but was done 4 weeks ago. I've asked for the results but not received them yet. Then a lady calls re altering the appointment and says its for niv. I haven't been told this and was told it was a gas test.

        a bed that still isn't in place but delivered the 15th of Jan.

        I'm really loosing hope that my care is non existent. We made a formal complaint but have had no response.

        I wish they really knew what it feels like to be so scared x
        I'm of the view we all should have home visits....good luck whatever you decide to do. Sorry you've been messed around🤗😘
        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.​​​​​​
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          #5
          A positive appointment at last. They apologised for the over sight and said it won't happen in the future.

          Made me feel listened to and not just moaning.

          Thanks all for your positive wishes x
          Diagnosed May 2021 bulbar onset als.
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            #6
            Oh shelly21 . How awful. Its hard enough having tests without having to wait needlessly for results.

            I hope today is better for you xx😘🤗
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              #7
              We must have been posting at the same time shelly21 . So glad your appointment went well xx
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                #8
                Originally posted by shelly21 View Post
                A positive appointment at last. They apologised for the over sight and said it won't happen in the future.
                Better not, they'll have us to answer to 😉😍

                Hopefully the nuts and bolts part of the appointment yielded you answers too 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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                  #9
                  I feel fine most of the time but my night time oximetry has dropped a tad which I guessed. But niv not needed yet.

                  I just hated having to wait wks and what with the bed and sleep issue it just added to my stress.

                  X
                  Diagnosed May 2021 bulbar onset als.
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                    #10
                    Originally posted by shelly21 View Post
                    But niv not needed yet.
                    Way to go Girl 👍👍👍 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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                      #11
                      shelly21 I’m sorry to hear that you’re having such problems with care. We are having the same problems here in Canada with our healthcare system. You’ve got enough on your plate without feeling ignored or forgotten.

                      I have been forced to be a squeaky wheel in order to get anything I need in a timely manner.
                      Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
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                        #12
                        Maria C its like we micro manage our own condition doesn't it.

                        Its horrible because not all departments are the same. It took months for us to finally complain and yes we understand covid as dented services but I'm 10 months post diagnosis and still having to do phone consultation with the respiratory consultant x
                        Diagnosed May 2021 bulbar onset als.
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                          #13
                          Originally posted by shelly21 View Post
                          A positive appointment at last. They apologised for the over sight and said it won't happen in the future.

                          Made me feel listened to and not just moaning.

                          Thanks all for your positive wishes x
                          I hope you receive positive improvement in the future. I can’t imagine being left out on a limb like that. How stressful! Xx
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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                            #14
                            shelly21 - so glad the appointment went well. I too had a respiratory appointment yesterday. I am stuck between two areas (the hospice referred me to one, my MND consultant to the other) and need to choose between them. But no idea which will do a better job of looking after me 🤔
                            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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                              #15
                              Tbh they are a bit busy re long covid patients. You could go to one place and always change at a later stage.

                              Our problem is that our team are miles away. They did pre covid do a clinic nearer but they are saying they are too busy to revert back.

                              I get really bad bum pain sitting in the car for more than 30 mins so not great.

                              I'm glad you are now getting the referrals you so need x
                              Diagnosed May 2021 bulbar onset als.

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