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    Wythenshaw appointment today

    I had my appointment with a breathing specialist at Wythenshaw.

    My blood gases were ok. Breath stacking must work.

    I’ve been put on a list for a PEG but could take up to a few weeks.

    He’s consulting colleagues about the suprapubic catheter as he too thought that it’s too risky. Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Good news about your breathing Lynne K ...hope everything else works out for you xx
    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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      #3
      LindaB thanks Linda x
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        Any idea when you'll know about the suprapubic catheter Lynne?

        Good to hear your respiratory muscles aren't badly affected. 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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          #5
          Keeping everything crossed including my catheter for you. 🤞😁😘😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Originally posted by Ellie View Post
            Any idea when you'll know about the suprapubic catheter Lynne?

            Good to hear your respiratory muscles aren't badly affected. xx
            No, he just said that he’d write to me after consulting his colleagues, and thanks xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Good appointment for you lynne. I've got my lung function test tomorrow. I hate it. X
              Diagnosed May 2021 bulbar onset als.

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                #8
                What's to hate when so many other wonderful things happen to us! 😉😁💐😘xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Originally posted by shelly21 View Post
                  I've got my lung function test tomorrow. I hate it.
                  I know how you feel shelly21 I rejoiced when I was told that there is no point in me having any further pulmonary function tests as they couldn't get "meaning readings" from my huffs and puffs - it was soul destroying to see my full effort barely registering on their screens, hard for my husband to witness too. I didn't need the ignominy of tests to tell me my lung function was on the floor.

                  Now all I do is a SNIP test 👍👍

                  I hope your tests go as well as possible tomorrow. 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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                    #10
                    matthew55 breathing is my fear. I know niv is in my future because I do want to live a decent while yet.

                    my lip seal is weakening re bulbar muscles. Luckily my respiratory consultant explained that if lung tests become hard for me there are other tests.
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      @ Shelley21…Breathing is a real worry for many of us.I tried the NIV and couldn’t gain anything from using it at night so after several attempts made the decision not to use a NIV.
                      Many people cope with the NIV and benefit from it but others decide against it.It’s a personal choice.

                      My palliative care nurse has been out to see me several times and explain what support I can expect to get via their team as a non NIV user .

                      All you can do is ask for information to make an informed and personal choice.I dislike the respiratory assessments too because I dread the results.

                      Hope all goes well for you tomorrow.
                      Mary x

                      LynneK ..glad your breathing assessment went well.Hope PEG gets sorted soon.
                      Mary x

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                        #12
                        I’m lucky that I get on well with my NIV. I panic if I can’t breathe well. I use my BiPap during the day as well as at night. I’m shocked at how quickly my breathing has deteriorated.
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          #13
                          shelly21 good.luck for today's appointment - hope all goes well. xx

                          Rosemary6NT I feel the same about rapid deterioration with breathing xx
                          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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                            #14
                            LindaB very scary. I guess the breathing is make or break 😕
                            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                              #15
                              Rosemary6NT I'm breathless even when walking (slowly)....maybe I need to practice breath stacking more😇😘
                              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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