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Breathing check - good news

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    Breathing check - good news

    I've been struggling with a few things recently that I can't resolve. One of which was my breathing. I have been getting increasingly breathless gradually over the last couple of weeks. I initially put it down to dust from the wetroom or aspirating the odd bit of food so I wasn't too worried.

    But it got worse until at times I was really breathless from trying to speak. So after several negative covid tests I contacted my respiratory team - who actually responded!

    They came and checked me over at home this morning which was so helpful. Apparently I am overbreathing. So not my MND. They suggested anxiety (medical professionals always have that as their go to πŸ˜†) but after further discussion we think it is because of the levels of pain I am in.

    So that was reassuring and explains why oramorph is helping too. Hopefully they will chase my consultant at the hospice and see if they can sort out my medication so I can start getting on with life again....
    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.

    #2
    I think the weather might not be helping. More dust blowing about and goodness knows what else. Nice to know they are on the case. Obviously read the paper and know this one is trouble. πŸ˜‰
    when i can think of something profound i will update this.

    Comment


      #3
      It was a team from Leicester, so not local. They had no idea I was trouble!! I'm just hoping to get the pain and allergy situation sorted now and start partying again. I've heard of a great new dance move...
      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


        #4
        I guess the local mob opted out and sent them in.

        My back is aching. I had to move Stephen around for a bladder scan this morning and now get him off the loo. Dancing would do my back the world of good.

        πŸ’ƒ
        when i can think of something profound i will update this.

        Comment


          #5
          TinyLady I can imagine anxiety plays a huge part in your breathing. Hope you get some answers soon x
          Diagnosed May 2021 bulbar onset als.

          Comment


            #6
            denise ...this might come as a surprise (probably not)but we have no local respiratory services.... so I am under the care of Leicester which is a fantastic service and I'm so grateful they came to see me.

            shelly21 I don't feel in the least bit anxious. I never do. I'm rarely stressed either. Almost to the point I worry I don't really worry enough.... except I can't be bothered to worry. But I am frustrated by the pain. I'm not going to lie, it's pretty constant 6 out of 10 and wearing me down. Maybe extra oramorph is the way forward.... if only I could open the bottle πŸ˜†

            Sunbathing this afternoon which is very relaxing....
            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


              #7
              TinyLady Good news re respiratory function πŸ‘πŸ‘

              What about a patch for constant delivery of pain meds, even until you know if the cause of the pain can be mitigated?? No bottles to open on the plus side, not great for the bowles, as you'll know from using Oramorph... xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                #8
                Ellie sadly a patch would be a definite allergy trigger. Anything sticky burns my skin off. I'm even having my rise recline chair specially recovered.... I'm just too allergic to things.

                It started because I spent so much time in hospital as a child. Now every hospital visit or medical intervention seems to trigger a whole lot more. They aren't mild and just a bit itchy either. I'm getting pretty scared to be honest. No one is doing anything about it.
                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


                  #9
                  That's a shame Tiny, I'm sorry πŸ€—πŸ˜˜
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #10
                    It's just bad luck. I'd love some support to find out exactly what is and is not the problem and then a plan for how I manage symptoms and things like a PEG. But I can't even get a grab rail without a 6 month fight, so I am just avoiding everything and becoming paranoid. No one responds to emails begging for support. I'm passed from pillar to post and it seems everyone either thinks I'm a fraud or not poorly enough for their time yet.

                    I doubt very much I will make it to end stages of my MND, so maybe that is a blessing. Who knows! It's not what I want. But I'm left with no choice. I would like to be in less pain though.
                    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

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