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.
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.
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