Orthotics appointment

[Arcadian]

I've a follow up orthotics appointment tomorrow, support for my ankles was put back a month or so due to my level of activity (despite foot-drop and leg / ankle weakness), it was felt that rigid support would compromise the remaining functional muscles. (Soft, wrap around support was proposed mainly for sensory feedback / muscle stimulation).

I feel slightly awkward about the appointment - the MND MDT had highlighted the need a couple of months ago, but I walk 2 to 4 miles most days, 6 miles a day at least once a week, 10 miles a day usually at least every 10 days or so.

I recently covered 70,000+ steps in 30 hours up a 49 floor building 33 times. The leg problems I had that weekend are my upper inner thighs, when fatigued and cold (or low overnight blood Oxygen), as well as any other time, my torso / trunk / collar bone muscles (left side mainly) causing me to slump slightly when sitting in a chair.
Also ran across Crewe Station between multiple platforms and stairs twice for my train home the last month with a backpack on, and felt it in my chest / breathing / arms, rather than legs and ankles.
A few things don't make sense, but I do appreciate and respect the proactive outlook of the Regional Centre, after a year+ of indifference at my local hospital.

A couple of months ago, the person assesing the orthotics need, positively identified / confirmed the foot drop and some ankle weaknesses, but was perplexed by my regular level of ability / activity.

My MND diagnosis is confirmed (March 2022 EMG / NC uses phrases "unequivocally supports a diagnosis of MND"), but every now and then some tangential anaomalies and ambiguities are thrown up (I have autoimmune inflammatory illnesses, as well as recently sleep and respiratory tests and clinic were heading in the direction of NIV, due to chest pains and other issues, but previously undiagnosed Asthma was identified).

In simple terms, with no obvious ankle pain or local problems like a foot buckling beneath me in daft footwear (5 hours in platform soles in a nightclub) that I feel apart from scuffed boot toes and about 4 foot drags in 15,000 to 25,000 steps (despite Consultant observing lower leg reflex issues and weakness), should the focus be on my upper inner legs above the knee, where I actually feel some weakness / hollowness, as well as my upper arms that make holding a book after half an hour challenging?

[Ellie]

... should the focus be on my upper inner legs above the knee, where I actually feel some weakness / hollowness

Your whole gait needs to be thoroughly examined - problems in the ankles can have an effect on muscles throughout the legs and vice-versa.

Orthotics are all about providing support to enable you to function safely for as long as possible and it may not be 'too early' to support a particular joint.

as well as my upper arms that make holding a book after half an hour challenging?

Yep, if they can offer arm/shoulder support, go for it.

Good luck tomorrow. xx

[Arcadian]

Reasonably positive appointment, but some niggling doubts.
Seemed solely (ha, pun) to focus on my ankles - nothing regarding upper arm weakness which is having the most practical impact with work / home (and psychological impact).
I briefly mentioned upper body weakness and slightly slumped discomfort in basic chairs (and respiratory / diaphragm overlap), but suggestion was compression layer top (which I sometimes wear anyway) and that it was outside the remit of the referral.

The ankle orthotics seem reasonable quality - fabric wrap-around as expected / suggested at the previous appointment, to avoid compromise of existing functional muscle.
Proprioception(awareness of muscle position) was mentioned several times, but apart from occasional foot drop (3 or 4 times a 15,000 - 20,000 step day), I don't have much positioning accuracy concerns, unless my upper arms get fatigued from holding weighty items / tools at chest height and above, then my fingers don't hit the right buttons or grip.

Orthotist was very knowledgable and engaging, but no analysis of how I walk or step.
Putting the left device on was mildly challenging due to my arm / wrist weakness between the two arms and upper left leg weakness trying to hold my leg down.
He suggested (as mentioned by Ellie above), that the ankle orthotics should help with the weakness / hollowness sensation I get in my upper inner thighs.

Introduction to use should be a couple to few hours a day at first.

First thing I noticed is the tightness (hopefully not aggravating circulation working outdoors in cold weather) and that my feet don't quite drop down in a full ankle range, which feels odd and makes my shins ache, particularly with plant / machinery control pedals and with stairs, where there is now also a muscle tightness above my knees and back of thighs after repetitive movements.
Managed to stumble and fall up a flight of stairs on the way home.

Just a niggling doubt that I should have been assessed walking and with stairs both before and after their issue, as well as arms and body muscles maybe prioritised instead of legs.
Will give it the benefit of the doubt.
A telephone follow up at the end of February...

[Ellie]

First thing I noticed is the tightness (hopefully not aggravating circulation working outdoors in cold weather)

It's 'normal' to have increased muscle tone with some MNDs, aka spasticity, and cold weather makes it worse.

You could try taking an antispasmodic but if you only have localised high tone, it may not be the most appropriate solution at this time, but maybe a small dose would improve functionality. Many people find taking CBD helps reduce muscle tone and keeping them warm however you can is a no-brainer - thermal leggings/long johns, socks, leg warmers, foot warmers, whatever it takes.

and that my feet don't quite drop down in a full ankle range, which feels odd and makes my shins ache, particularly with plant / machinery control pedals and with stairs, where there is now also a muscle tightness above my knees and back of thighs after repetitive movements.

Those ankle supports will stabilise your ankle but won’t ‘cure’ foot drop - some people use a simple attachment to their shoelace in addition to ankle strapping. I've no idea if it would benefit you, this is what I mean:

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[Ellie]

Arcadian Sorry, I was interrupted...

I was going to say whilst it is indeed disappointing that your arm function was ignored , it's not that surprising really as the primary focus of Orthotics people is definitely on feet, legs and walking.

I agree with you that you should have been evaluated walking and climbing steps wearing the ankle supports - rather pointless giving you walking aids without checking if they are fit for purpose 🤨

If your feet have even the merest hint of foot drop in bed, now is the time to start correcting it before the muscles get too tense/overstretched. xx

[Arcadian]

Cheers again Ellie my muscles have been 'tense' / unrelaxed for at least 3 years (private physio appointment in 2020 pre-diagnosis, spotted muscles that should be relaxed weren't doing so).
Bizarrely, 84 year old Father has had similar for 40+ years (adding to my 'ambiguous' atypical diagnostic background and journey).

I try to be as sensitive as possible around mentioning my symptoms and activity levels on this forum and my diagnosis (when I accessed my medical records / hospital to GP letters) uses phrases like 'unequivocally supports a diagnosis of MND' - but respecting heterogeneity and some reasonably typical symptoms progression for a 53 year old, other aspects don't make sense, but a GP practice that always defers to hospital with no proactive intervention and a local hospital that ranks in the bottom 10 in England, I have to respect and admire the Regional MND MDT clinic outside my locality for their proactive outlook and referrals within their grounds for secondary aspects.

I'm just a bit baffled after the intense charity event I took part in, where only the coldness seemed to cause me a problem elsewhere in my limbs. (no ankle problems, one miss-step in 70,000 when cold and tired).
I've been complaining to my GP for 5+ years about neuromuscular - particularly bowel & bladder spasms / incontinence and peripheral digit problems in the cold, (my Dad has Raynauds, hence concern about orthotics tightness and my toes in the cold).
I wear technical / thermal baselayers and have had particular problems with muscles when cold for 15+ years (sea crash survival exercises for previous job, in a swimming pool used to cause me a few problems, cramps, slowing down).

I seem with my GP practice where there may be secondary / minor conditions, that these are dismissed as "Well you can get that with Crohn’s, or MND..." with no further tests, examination.
The Asthma diagnosis 2 weeks ago being a point - referred by out of hours Doctor to A&E in Dec 2020, with chest and arm muscle sensations that they were confident weren't a heart attack - my local hospital spent over a year doing cardiology to the nth degree because they couldn't find anything, rather than consider pre-existing hiatus hernia / reflux and autoimmune profile
or referral to other departments, but prescribe statins "for this gentleman's long term health'
MND clinic recently do one round of tests and spot Asthma, aggravated by reflux...

I'm not going to decline treatment and advice by what seems to be a very good MND MDT clinic, but the lack of interest via my Doctor's Practice, or their lack of enthusiasm to communicate symptoms progression or variation back to the hospital is disappointing.

Twice they have been instructed by letter from a Hospital Consultant to prescribe or test and failed to do so (I get courtesy copies from the MDT clinic, so have to go through the GP reception to 'remind' them.

I have appointments with some excellent dedicated MND Team clinicians, but it does get draining when the focus is lost and minimal GP support.
2 Consultants had suggested early on that there may be "more than one thing going on", but that hasn't been explored further - eg. sensory skin reflex twiches when lightly touched and essential tremor are just commented on as "That's unusual..."

I could understand today with the ankles, if I had been assessed walking, or the aspects of clinical weakness / reflex responses had been part of a physical medical examination (last physical examination was first week in September).
Another frustration having spent years in testing laboratories, is why aren’t grip, arm strength, leg strength dynamometer tests used, so a progressive measurement can be applied at dated intervals regarding MND?

Although my work has significantly reduced (woodland conservation the last 8 years) for obvious reasons around weakening arms and traditional hand tools and chainsaw handling and pulling tractor controls (and gradual psychological impact of nit being able to do as much), my daily / weekly walking has nearly doubled since September.

A few things don't make sense, or have slipped regarding focus by others...