Hello from Cheshire...
Hi, I'm Dan in Cheshire.
I've been given an "Interim diagnosis of limb onset ALS".
I've had some 'odd' muscle aches and nerve type sensations since about December 2020, as well as quite a bit of fatigue (I also have Crohns Disease, but this 'fatigue' seemed different from over the previous decade of various episodes relating to Crohns).
In November 2021, I woke up one morning with a very weak left hand (couldn't squeeze toothpaste, hold a mug, pull a zip or turn a key - all the positional and sensory functions seemed fine, just no strength).
Noticed some hand atrophy - particularly between thumb and finger.
Was referred to a hand specialist and was suggested as Cubital Tunnel Syndrome (with some atypical symptoms) and after left arm nerve conduction and EMG tests, was pencilled in for Ulnal Nerve Decompression surgery.
(During the left arm electro tests, I asked about the right arm sensations I'd also been getting "That's not on my list, has anybody checked your neck?")
5 days before potential left arm local nerve surgery, I had relatively sudden slight muscle atrophy around my right arm elbow.
G.P. referred to a musculoskeletal unit, they did various physio tests, requested an 'urgent' MRI scan of neck.
Was waiting weeks for MRI scan, so booked a physio assessment, they observed various atypical reflex responses and emailed my G.P.
I pushed for a Doctor's appointment, as further right arm elbow / lower right arm atrophy had occurred, as well similar pains / sensations to my arms the last year, now happening in my lower right leg and both feet.
Doctor felt MRI wait was unreasonable and because I highlighted local left arm adverse electrical results when suspected (not unreasonably) Cubital Tunnel Syndrome a few months before and now similar visual atrophy in other arm - a neck MRI scan would at least give a direction of undetected spinal problems, else we realistically have to consider serious neuromuscular degenerative illnesses, due to electro results on left arm.
Was regerred / admitted to local large hospital that day into an acute assessment unit, a Neurologist from Walton assessed MRI scan, with no spinal concerns, didn't think it was MS and would have book me into The Walton Centre for additional electro tests soon, as well as blood tests that day.
I showed him my latest physio assessment when he did my reflexes and their 'adverse' observations, I had also done a Lyme Disease blood test from an acredited laboratory (as I'm potentially higher than average risk) and that was negative / normal.
All over limb and tongue base EMG testing at The Walton Centre, Liverpool 8 days later and subject to some additional caveats, the Interim diagnosis.
My G.P. also indicated a range of additional support resources they will review / initiate in a few weeks time.
Meanwhile, I've been doing a lot of legwork ensuring measures are in place for when additional legal, financial, medical support and intervention are required, as well as checking my previous employer's pension criteria.
I'm 53 with no children, but have still had to have some deep and challenging conversations with extended family and close friends.
l'm finding that compartmentalising practical / emotional / interpersonal considerations and at times rationing my time on them is helping mentally for the way ahead.
I left mainstream employment (sci & eng) 8 years ago due to Crohns disease problems and set up a small conservation business, where I don't have to work 'normal' hours.
Obviously I now have quite a few things to consider and the next Consultant's appointment should bring a bit more clarity to the journey ahead.
Interestingly, I also have an unusual high childhood Lead exposure risk from Chester's historic leadworks (documented in a 1980s BMJ survey), as well as occupationally with Lead solder in electronics repair and Tetraethyl Lead instrument and control systems in the days of Leaded petrol processing at refineries.
(Lead, particularly in children being a recognised neurotoxin).
Trying to get a lot of the practical considerations for the future mapped out early, as well as parking and prioritising important / unimportant stuff.
eg. Halted some previously planned alterations at home, as my house (bungalow) is small, but could easily be gutted and adapted should I need mobility and accessibility alterations in the future.
I've also decided to upgrade to a decent fitness watch, to monitor background health, as well as a pretty intensive professional sports physiotherapy massage every couple of weeks, so as to monitor and record overall muscle condition, assist circulation and lymphatic system (as well as being an opportunity to zone out from everything).
I did have concerns back in November when I had the local left arm issue and for family history reasons considered that the risks could go this way.
I've been given an "Interim diagnosis of limb onset ALS".
I've had some 'odd' muscle aches and nerve type sensations since about December 2020, as well as quite a bit of fatigue (I also have Crohns Disease, but this 'fatigue' seemed different from over the previous decade of various episodes relating to Crohns).
In November 2021, I woke up one morning with a very weak left hand (couldn't squeeze toothpaste, hold a mug, pull a zip or turn a key - all the positional and sensory functions seemed fine, just no strength).
Noticed some hand atrophy - particularly between thumb and finger.
Was referred to a hand specialist and was suggested as Cubital Tunnel Syndrome (with some atypical symptoms) and after left arm nerve conduction and EMG tests, was pencilled in for Ulnal Nerve Decompression surgery.
(During the left arm electro tests, I asked about the right arm sensations I'd also been getting "That's not on my list, has anybody checked your neck?")
5 days before potential left arm local nerve surgery, I had relatively sudden slight muscle atrophy around my right arm elbow.
G.P. referred to a musculoskeletal unit, they did various physio tests, requested an 'urgent' MRI scan of neck.
Was waiting weeks for MRI scan, so booked a physio assessment, they observed various atypical reflex responses and emailed my G.P.
I pushed for a Doctor's appointment, as further right arm elbow / lower right arm atrophy had occurred, as well similar pains / sensations to my arms the last year, now happening in my lower right leg and both feet.
Doctor felt MRI wait was unreasonable and because I highlighted local left arm adverse electrical results when suspected (not unreasonably) Cubital Tunnel Syndrome a few months before and now similar visual atrophy in other arm - a neck MRI scan would at least give a direction of undetected spinal problems, else we realistically have to consider serious neuromuscular degenerative illnesses, due to electro results on left arm.
Was regerred / admitted to local large hospital that day into an acute assessment unit, a Neurologist from Walton assessed MRI scan, with no spinal concerns, didn't think it was MS and would have book me into The Walton Centre for additional electro tests soon, as well as blood tests that day.
I showed him my latest physio assessment when he did my reflexes and their 'adverse' observations, I had also done a Lyme Disease blood test from an acredited laboratory (as I'm potentially higher than average risk) and that was negative / normal.
All over limb and tongue base EMG testing at The Walton Centre, Liverpool 8 days later and subject to some additional caveats, the Interim diagnosis.
My G.P. also indicated a range of additional support resources they will review / initiate in a few weeks time.
Meanwhile, I've been doing a lot of legwork ensuring measures are in place for when additional legal, financial, medical support and intervention are required, as well as checking my previous employer's pension criteria.
I'm 53 with no children, but have still had to have some deep and challenging conversations with extended family and close friends.
l'm finding that compartmentalising practical / emotional / interpersonal considerations and at times rationing my time on them is helping mentally for the way ahead.
I left mainstream employment (sci & eng) 8 years ago due to Crohns disease problems and set up a small conservation business, where I don't have to work 'normal' hours.
Obviously I now have quite a few things to consider and the next Consultant's appointment should bring a bit more clarity to the journey ahead.
Interestingly, I also have an unusual high childhood Lead exposure risk from Chester's historic leadworks (documented in a 1980s BMJ survey), as well as occupationally with Lead solder in electronics repair and Tetraethyl Lead instrument and control systems in the days of Leaded petrol processing at refineries.
(Lead, particularly in children being a recognised neurotoxin).
Trying to get a lot of the practical considerations for the future mapped out early, as well as parking and prioritising important / unimportant stuff.
eg. Halted some previously planned alterations at home, as my house (bungalow) is small, but could easily be gutted and adapted should I need mobility and accessibility alterations in the future.
I've also decided to upgrade to a decent fitness watch, to monitor background health, as well as a pretty intensive professional sports physiotherapy massage every couple of weeks, so as to monitor and record overall muscle condition, assist circulation and lymphatic system (as well as being an opportunity to zone out from everything).
I did have concerns back in November when I had the local left arm issue and for family history reasons considered that the risks could go this way.
Comment