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    coughing & wheezing

    When lying horizontal at night the last week or so, I get a dry cough that doesn't seem to shift anything up.
    I end up coughing until inside my skull hurts.
    I've not got Covid or a cold and can be reasonably exertive whilst upright during the day, with no great issues other than a slight wheeze / clicky sounding gurgle down the throat.

    Saw a G.P. yesterday over other things and he feels it's possibly weakened muscles.

    I have a respiratory appointment with a Consultant next week after extensive breathing tests / arterial blood test at the hospital last month. (blood was 95% on an afternoon sample).

    Back in December 2020, arguably my first symptoms on this journey, were chest pains at the same time as weird arm sensations (confirmed as not a heart-attack at the time, possibly pericarditis - but I have a previously observed hiatus hernia too).
    ​​​​​I've had internal chest pains / spasms during the summer and both A&E and later CT scan rule out a heart problem (local hospital and no Neurology hospital overlap).

    My sports watch picks up the occasional night time blood Oxygen dip, that has become slightly worse over the last year, coincidental with disturbed sleep.
    FVC was 3.58 a month ago, before lung function testing I haven't had results for yet.
    Hospital issue overnight monitor was a mean of 93.6%.

    What sort of questions should I be asking and what should I be watching out for?
    Attached Files
    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

    #2
    Hi Arcadian, try sleeping in a more upright position propped up with pillows.

    Comment


      #3
      Originally posted by Arcadian View Post
      When lying horizontal at night the last week or so, I get a dry cough that doesn't seem to shift anything up.
      I would have thought that if a night-time dry cough were due to upper respiratory muscle weakness that you would have bulbar symptoms including excess saliva and impaired speech. Has acid reflux been ruled out for sure and allergens? It could be caused by spasms.

      Originally posted by Arcadian View Post
      ... whilst upright during the day, with no great issues other than a slight wheeze / clicky sounding gurgle down the throat.
      Does that happen after eating or just randomly? And you’ve no daytime cough or swallowing issues?

      Originally posted by Arcadian View Post
      FVC was 3.58 a month ago, before lung function testing I haven't had results for yet.
      I’m a tad confused… How do you know what your FVC was last month, and you hadn’t had any the lung function tests or results?

      Originally posted by Arcadian View Post
      Hospital issue overnight monitor was a mean of 93.6%.
      And the minimum?

      Have you tried sleeping with 3-4 pillows to see if raising your oesophagus helps? xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        cheers Ellie for a comprehensive reply - the FVC was from earlier simpler testing as recorded by the Neurologist / clinic, the last lot (results next week) was multiple repeats of different exhalation / inhalation styles into an analyser profiling pressures and volumes and duration.

        One observation by a Doctor earlier in the year questioned bulbar aspects concern and neck muscle differences (one sided tightness externally - choking reflex if pressure by the adams apple) and some night time (horizontal) breathing problems.
        I do get some random swallowing choking problems, but only now and then - as well as neck muscle spasms and fasciculations.
        SALT clinic checks indicated a minimal concern in September.
        A couple of friends the last couple of weeks have suggested voice differences.

        Increased saliva is occasionally noticeable from the corner of my mouth randomly, including daytime.

        I do have GORD, but reflux not massively noticeable the last month (usually after certain disagreable food types).
        I do get internal spasms (hence my local hospital arguably mis-focussed 'heart attack' checks, but then not coordinating anything else.

        I think there's probably more than one thing going on (due to long-term intestinal known problems).

        The wheezing is regardless of eating.
        Choking type coughing that can't bring anything up does occur in the daytime, mainly sitting, but occasionally standing / walking - then a spell of wheezing and wanting to cough repeatedly again (I'd describe it as spasms).

        Positioning with pillows helps a bit, but then sggravates other problems (bowel & bladder).
        Most comfortable position in bed is fetal position on my left side.
        The last 6 weeks (possibly longer), I've been having discomfort when sitting and can end up slightly more slumped than intentional.
        I also get external chest muscle spasms and some fasciculations on the main trunk part of my left side and abdomen.

        I'd interpret the 'start' of my MND journey as Dec 2020, 12 months before visual limb symptoms and being chest and chest muscle issues that at the time never went beyond my local hospital saying 'well it's not a heart attack'
        (Internal chest spasms feel like something inside the chest being grabbed).

        Not sure on allergies (my Dad now 84 acquired Asthma in his late 60s), I'm allergic to Piriton (an anti-allergen)! and Sudafed.
        I stopped at my partner's place at the weekend and she has a dog, but I was wheezing a couple of days beforehand.
        Last edited by Arcadian; 29 November 2022, 19:22. Reason: positioning
        2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
        Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

        Comment


          #5
          Respiratory Consultant today was reasonably pleased with all my measured breathing tests a few weeks ago and will see me again in 3 months.

          He did identify Asthma and was surprised nobody else had considered it.
          Symbicort prescribed.

          Existing hiatus hernia also a consideration for a period of regular medication, rather than ad-hoc.

          One of the most professional, pragmatic and empathetic Doctor appointments I've had.
          Went over health background, reassuring pro-active monitoring relative to MND going forwards, as well as additional considerations from neuro-toxin exposure risk history.
          2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
          Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

          Comment

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