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Consensus at appointments

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    Consensus at appointments

    Slow start for me today and only just up to much by mid-morning.

    Sleeping habits have changed slightly, but can't completely put my finger on why (some additional external pressures).

    I seem to have rapidly acquired a bit more arm atrophy, weakness and deep lower arm muscle sensations / aches, a step change like what happened to my left hand the first time round - but this is symmetrical in both arms in the same place occuring at the same time (which I understand to be a bit unusual).

    I have a physio and massage session later for the first time in ages, so will see what their observations are. The MND MDT Clinic were concentrating on ankle orthotics, but I walk 5 miles most days with no problems, whilst my arms and left side abdo muscles causing the most impact on work and daily life don't seem to get much consideration...

    A quiet night in planned later.
    Various appointments and stuff to plan for next week and just trying to keep on top of things is realistically consuming 2 days a week of my time, compared to life before MND.

    How does one 'diplomatically' steer the direction of care of an otherwise excellent MND MDT team?

    A month on from ankle orthotics, I take 1 or 2 days a week off from wearing them and I have less leg pains (was minimal prior to wearing orthotics) on those days.
    I walk an average of 5 miles a day, almost every day for the last year+ (from 12+ months of phone / sportswatch and gps data)
    I can be in bed / stuck at the house with Crohn’s Disease problems a couple of days a month, but other days I cover 8, 10 and sometimes 12 to 15 miles walking.
    To the point where the orthotics are causing foot and shin pain I never had before.

    Either the clinic are being extremely proactive for future concerns, or I wonder if they have now mixed me up with a different patient?
    I do have footdrop - but my problems have consistently been arm strength weakening, left hand grip strength poor and chest problems.

    Ironically, combined with left side body muscle weakness and arm / wrist weakness, the orthotics are increasingly uncomfortable on my gut and breathing and arms, when putting on and off.
    (Typing this holding a phone is painful, tiring).

    I've just had a courtesy copy of my recent respiratory consultation letter back to the MND Consultant and GP and apart from hitherto undiagnosed Asthma, present respiratory symptoms are not at present an MND issue and attributed to hiatus-hernia / reflux and Asthma (and have mainly resolved since taking appropriate prescription meds, possibly improving sleep too - my local hospital / A&E / GP in 12 months of mainly cardio tests, missed that I had Asthma).
    Respiratory Consultant highlights other autoimmune / inflammation / infection history aspects of my health that have also been a disregarded ambiguity along this journey so far.

    My plan is to have a brief 'shopping list' of bullet points to leave with the Consultant at my next appointment, with reference points of dates etc. in my medical history - so he can prioritise or disregard them in time beyond the appointment window.

    I've had a few years of internal muscle spasms and twitches, particularly large intestine, bladder and occasionally what feels like my diaphragm (usually coinciding with a single weird hiccup). In this time, my Crohn’s has been quite stable, but I seem to be in a no-mans-land regarding a Consultant interested in addressing the discomfort and inconvenience it causes.

    Ironically pre-diagnosis regarding my arms, 6 to 8 months there was reasonable and accepted risk in dialogue between myself and GP that the outcome could be MND.
    Two years of ambiguous and at times badly managed diagnostic journey, detract from my own level of confidence when pre-existing underlying conditions are ignored or missed or downplayed when interacting with discomfort and symptoms.​
    Last edited by Arcadian; 14 January 2023, 12:39.
    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)...

    My first thought would be that if the orthotics are causing pain, stop using them. If you can walk between 8-15 miles comfortably, I really don’t think you need them yet. Did the orthotics person explain why they thought you needed them?

    Orthotics will change your gait and also possibly your posture, causing your body to start using different muscles in order to remain comfortably upright, such as abdominal ones, hence any discomfort in that area (which may have an impact on your breathing as well). And if it’s painful to get them on, you probably need some different ones which are easier to use.

    Regarding your other issues, you could certainly leave a “shopping list“ with your consultant. Even if they don’t do anything with it, at least it will be there and you could perhaps refer to it at later appointments.

    As to how to do this “diplomatically”, you could perhaps gently stress the issues that you are most concerned by, and see what happens?

    Wishing you luck with this.


      Had a telephone clinic chat today and despite a 'secure' MND diagnosis, and "EMG unequivocally supports" some of the neuro sensations I get are considered ambiguous and atypical of MND.
      Unfortunately I'm at a loss as to how to get them assessed and interpreted.
      Arm sensations, numbness and at times perfectly symmetrical occurrence in each arm, as well as gastro-intestinal spasms and twitches (long-term autoimmune condition) are at a level of distraction at the same level as the relatively slow (up to now) arm muscle atrophy.
      I've been advised to mention to Orthotics on their follow-up appointment, the hollow numbness I now get in my legs, since being given them last month.
      The leg sensations are similar to my arms and I had just put them down to progression and a subtle change in muscle use since using orthotics.

      Tempted to just ask my GP for a new neuro referral excluding existing MND, assuming it's something unrelated and different.
      The arm sensations are concurrent with the start of my MND diagnostic journey and ambiguity from 2020, but it just gets dismissed as being atypical and ambiguous, despite being the biggest intrusion and inconvenience in my day to day life.

      Just had a minor step change in some further right arm muscle atrophy, but after a week of symmetrical bilateral left and right arm sensations - exactly how things started over 2 years ago.
      Symmetrical sensations, asymmetric visual muscle loss...
      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)...


        You seem to think about all of this quite a bit. The stress/anxiety can be just as bad as having MND. How much time have you been spending on the good things in life? Family and friends, pets (?), and stopping and smelling the flowers on those long walks are things that give life meaning and are a perfect distraction from worrying about all of the above.

        Remember that happiness and joy in your life are the best things you can have.


          Cheers Johnny5
          I own and manage 20 acres of woodland, meadow and orchard - which I set up after leaving a job of 30 years some years ago, after an unrelated lifelong illness change meant I couldn't continue with that work.
          My present work is self employment in the 'arcadian' surroundings I have mostly created over the years and I can usually pick and choose my own hours, depending on level of fitness.
          Obviously resources are finite and forestry and conservation as a job becomes challenging with MND.

          I normally enjoy it quite contentedly, as well as other social aspects elsewhere.

          What isn't enjoyable is uncertainty.
          I have Consultants challenging each other on atypical symptoms or ignoring them as inconvenient, I started my MND journey with 12 months of initial symptoms being ignored, then misdiagnosed and narrowly averted having inappropriate arm surgery.
          I've recently had a more common underlying condition (Asthma) diagnosed via the MND team in 2 weeks, compared to my local hospital spending a year investigating it as a non-existent heart condition for 12 months.
          My atypical symptoms overlap with a non-terminal neuromuscular condition, some aspects overlap with previous (15 years) autoimmune inflammatory illness.
          One onset aspect coincides with a hospital procedure and medication / reaction.
          I've had significant strength recovery in one limb and some neuromuscular symptoms are episodic (which may be considered unusual for MND).
          I walk 5+ miles in pleasant surroundings most days despite being prescribed leg orthotics.

          I don't think it is unreasonable to ask different discipline Consultants to work together, prioritise appropriately and come to a consensus.

          I also look after 2x 84 year old infirm parents (one with neuromuscular infirmities) and try to make their lives as comfortable as possible, so won't be jetting off to foreign climes.

          More positively, I overlap distant social stuff on a day out, with lending 'brain time' to researchers for research and scanning, because it's a potential future way in regarding MND diagnosis and mitigation.

          This month2at my local hospital, I had 2 areas of skin cancer passed off as 'just blemishes' (they get excised next month after a second opinion having more concern).

          My local hospital is in the bottom 12 ranking of English hospitals and mistakes with my other illness justifiably legitimise genuine questions around overall care.

          If I listed my levels of activity, social life, walking, motorbike, conservation & forestry, nightclubs etc. 2 years in from MND diagnostic journey, it would be distressing to others on here and they would genuinely question my diagnosis.

          I don't question that diagnosis, just how many misdiagnosis of other illnesses and symptoms impacting are acceptable regarding legitimised questioning.

          (My original work background was science and engineering based in complex systems fault diagnosis and test & measurement to International standards. There are times where medical testing for me has overturned a Doctor’s interpretation of my symptoms. eg. 4 years of intestinal obstruction missed. That is why I think questions are reasonable based on previous experience and lack of holistic overview).

          I feel 'Go off and enjoy life and don't worry', is an oversimplified reply...
          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)...


            Nobody should ever have to justify how they live their life with an MND - there is no 'right way' nor 'wrong way' of coping. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


              Ellie I think folk would be understandably disappointed by now if how I live my life didn't involve decadence and weirdness, good humour, science based tree-hugging, a bit of altruism, off the wall philosophising...

              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)...


                Arcadian Aww, you forgot to mention the 👠👠 😉😁😁
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                  Chunky boots, not high heels Ellie...
                  (He said defensively - particularly as I'm being pressured to get a pair of tickets for ​​​​The Rocky Horror Show, when it's on near me next month).

                  A couple of weekends ago trying to squeeze into (and later out of) a rubber catsuit that I first bought when I was a stone lighter and didn't have weak arms back then - was not a problem I had planned ahead for...

                  I've been involved in some niche accessibility rights campaigning for years (due to having Crohn’s) - I'm off to a discussion night in Manchester 31st Jan on disability, sex and the kink / fetish scene.

                  (Kinq on Instagram if folk are interested / feeling empowered / curious).
                  I've avoided a direct link in case it breaks forum rules - but there is a strong social media and real life disability sex and sexuality movement out there, even if folk seldom talk about it or about relationship permutations, personal desires etc.

                  On a scale of 1 to 10 on living life, I usually run at about 11, but with deep bouts of introspection and what ifs, calculated risks and "maybe next month, I'm being careful with health / money / whatever this month..."
                  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)...