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    Respiratory tests

    I have my first appointment at the respiratory unit tomorrow. Can anyone tell me what I can expect? Generally, I only experience slight breathlessness when trying to speak or if I walk too fast but am a little anxious that my tests may prove otherwise!. Will I be sent away with an overnight oximeter? Any help/advice would be appreciated
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

    #2
    Originally posted by Hope View Post
    I have my first appointment at the respiratory unit tomorrow. Can anyone tell me what I can expect? Generally, I only experience slight breathlessness when trying to speak or if I walk too fast but am a little anxious that my tests may prove otherwise!. Will I be sent away with an overnight oximeter? Any help/advice would be appreciated
    It depends on your results. At my recent breathing appointment they only did blood gases from a blood sample from my ear lobe. In my case nothing was needed but we’re all different. Good luck 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.

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      #3
      1st appointment with respiratory consultant πŸ—£

      Hope there's a thread I wrote with my 1st experience if you type it into the search box..good luckπŸ‘πŸ»
      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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        #4
        Hope

        I had my 1st assessment in December. Like you I was diagnosed in November and am still walking. I wouldn't worry too much as they do the first assessment soon after diagnosis. Mine too was a balloon on the ear. They got out a mask for me to try on and talked about how it works but it wasn't required at that point. I now have a peg and it can get complicated to have the operation if you leave it until your breathing is affected. Go with an open mind. They gave me a leaflet of things to look out for which indicate breathing is an issue.
        Diagnosed 3rd November 2021 Bulbar Onset

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          #5
          Originally posted by Hope View Post
          I have my first appointment at the respiratory unit tomorrow. Can anyone tell me what I can expect? Generally, I only experience slight breathlessness when trying to speak or if I walk too fast but am a little anxious that my tests may prove otherwise!. Will I be sent away with an overnight oximeter? Any help/advice would be appreciated
          I had a blood sample taken from my ear lobe which can tell them if you are under breathing and not getting rid of all the carbon dioxide that you should. They will put an oximetry on your finger to check your oxygenation. They gave me a spirometery test to check my FEV and FVC (the amount of air you can force out of your lungs and forced volume) and peak cough flow (how strong your cough is). They can then tell if you need some sort of non invasive ventilation or cough assist device. Previously I had overnight oximetry which was satisfactory at the time. There was a lot of history gathering as well and plan for the future.
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #6
            Basically we find out how a lab rat feels. πŸ€πŸ˜‚πŸ˜πŸ˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              matthew55 I already feel like that!

              LindaB thank you, I have read your previous thread and it is very helpful.

              GillB it is the thought of being told to consider a PEG that worries me! I do not have any swallowing problems at the moment and have been able to eat well enough to put on weight.

              Rosemary6NT thank you. I have had the finger oximetry done a couple of times and was told all was well so fingers crossed for tomorrow's tests.

              Thanks everyone. So grateful for this forum. x
              Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

              Comment


                #8
                Originally posted by Hope View Post
                Generally, I only experience slight breathlessness when trying to speak or if I walk too fast but am a little anxious that my tests may prove otherwise!.
                Whatever the outcome is tomorrow, don't think of the results as a relection of what you cannot do, rather confirmation of what you can do.

                Plus... I don't mean to trivialise respiratory test results, but honestly, how you are feeling each day is what it's all about, not what your FVC, O2 Sats reading etc. etc. is.

                One person might have a 'great' lung capacity yet feel awful, whilst another with a 'very poor' lung capacity can feel full of vim.

                Love Ellie.
                ​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 have my lung function test then get sent an overnight oximetry tester. They look at results from that.

                  Mine i sit in a booth and do different forced blows/inhales etc at different force. Its a mouthpiece that you form a lip seal around. I also do a sniff test as my bulbar muscles are weakening. I also do a lying down forced blow test.


                  I think Ellie is bang on. Basically how you feel from day to day. My anxiety causes me to shallow breath so I'm working on my anxiety etc.

                  Things like headaches and daytime sleepiness are signs to be mindful of.

                  X
                  Diagnosed May 2021 bulbar onset als.

                  Comment


                    #10
                    Originally posted by Ellie View Post
                    Whatever the outcome is tomorrow, don't think of the results as a relection of what you cannot do, rather confirmation of what you can do.

                    Plus... I don't mean to trivialise respiratory test results, but honestly, how you are feeling each day is what it's all about, not what your FVC, O2 Sats reading etc. etc. is.

                    One person might have a 'great' lung capacity yet feel awful, whilst another with a 'very poor' lung capacity can feel full of vim.

                    Love Ellie.
                    It is definitely all about how you feel I agree with Ellie.

                    My CO2 results and oximetry were not too bad/borderline but the weakness of my diaphragm and poor lung function as measured by spirometry and the distress I felt suggested the use of NIV which I couldn’t do without now
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #11
                      Ellie thank you. I am very much trying to focus on what I can still do (and realise that it is a lot more than most of you here, so am humbled that you all take time to respond to my posts). x

                      shelly21 thanks, that is helpful. x
                      Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                        #12
                        Just wanted to say how helpful I have found this discussion and LindaB - your earlier post about respiratory consultation.

                        I'm having terrible issues with deep sleep and headaches. I actually dreamt someone was using a hand drill on my head last night, but it was just a headache 🀣

                        Got my first appointment booked in for March, so a way to go yet - but at least I can start preparing questions.
                        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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                          #13
                          TinyLady I found that before I had NIV I was sleeping deeply and longer than usual. However never any headaches (Or rarely). Good to have a list of questions...if you're having lots of headaches could they make the appointment earlier?
                          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.​​​​​​

                          Comment


                            #14
                            LindaB - I think I will ask on Monday when I go to clinic. I'm sleeping so deeply for around 11 hours every night and waking feeling really groggy and headachy. I'm trying not to make a fuss about every little thing as still waiting for confirmed diagnosis (so might be nothing at all) - but my symptoms started 2017 so on catch up πŸ˜†
                            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.

                            Comment


                              #15
                              Originally posted by TinyLady View Post
                              I'm sleeping so deeply for around 11 hours every night and waking feeling really groggy and headachy.
                              Do raise this issue at your appointment, it may be nothing but it should be checked out - in terms of 'making a fuss', this is fuss-worthy 😘
                              ​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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