Paully50
Member
- Joined
- Jan 18, 2021
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- SY
- City
- Sheffield
Hi
new here
So my symptoms started 2.5 years ago.
it all started simple enough, cramping in hands, pains in my wrists and arms when i was decorating rooms in the house.
They just felt so weak really quickly whenever i did anything. i couldnt lift much at all and fatigue set in very quickly
Things progressed a little and i noticed my legs looked thinner than usual and felt weak and hurt during the night. My right leg especially.
i also noticed my shins had gone very bony. i had lost alot of muscle mass from my arms and legs so thought enough was enough and needed checking out.
2 years ago i had an EMG and nerve test at my local hospital organised by my rheumy. They just tested 1 muscle in my right leg and 1 in my right arm/wrist
The test came back normal/negative
having a normal test i then carried on with my life.
But i was still having alot of weakness and wastage in my legs.
I struggled to even cut the lawn and walk the dogs.
by the end of the night i was really tired and ached all over
i plodded on with life, thankfully the pandemic came and i found i was seated for more of the time which helped with the weakness
Last year i noticed i was getting short of breath quite alot. I kept a spo2 meter handy to check my o2 levels when i felt breathless. i was also waking with a headache each morning so i think im having problems with co2 still in my bloodstream.
Jump to this month.
My legs and arms look very thin and my shins and ankles are just bone. However, i can still go onto my tiptoes. I am convinced my brachialis muscle on my left and right arms is completely atrophied. i struggle to do an exercise that uses this muscle. i cannot feel the muscle at all and there is a gap in its place. i can push my fingers right inside near my elbow.
i am now under a neurologist, he has noted that my left leg is now 1cm thinner than 6 months ago. right leg stayed same.
i have lost so much weight without trying. i am a bag of bones. i wonder how i am managing to walk around. many people have noted it.
My Neuro has noted that my right ankle jerk is absent and my left is weak, and my left bicep reflex is also absent, my right is normal.
This has freaked me out, i checked the nhs website what those meant and it is a problem with LMN lesion and they had ALS as the top reason on both ankle jerk and bicep reflex.
So now im worried that the EMG was done incorrectly or at the wrong time and i actually have ALS after all.
My arms and legs are so weak and wasted.
i am still having problems with my shortness of breath and bringing up lots of phlegm.
i cant think of any other reason why 3 of my 4 limbs has weak or absent reflex other than ALS being the reason.
I do not have any fasciculations and never noticed that i ever have.
i am still working as i have a desk job. im wondering if i have a slow progressing form of ALS as i am still able to walk after 2.5 years.
Does this sound like ALS.
new here
So my symptoms started 2.5 years ago.
it all started simple enough, cramping in hands, pains in my wrists and arms when i was decorating rooms in the house.
They just felt so weak really quickly whenever i did anything. i couldnt lift much at all and fatigue set in very quickly
Things progressed a little and i noticed my legs looked thinner than usual and felt weak and hurt during the night. My right leg especially.
i also noticed my shins had gone very bony. i had lost alot of muscle mass from my arms and legs so thought enough was enough and needed checking out.
2 years ago i had an EMG and nerve test at my local hospital organised by my rheumy. They just tested 1 muscle in my right leg and 1 in my right arm/wrist
The test came back normal/negative
having a normal test i then carried on with my life.
But i was still having alot of weakness and wastage in my legs.
I struggled to even cut the lawn and walk the dogs.
by the end of the night i was really tired and ached all over
i plodded on with life, thankfully the pandemic came and i found i was seated for more of the time which helped with the weakness
Last year i noticed i was getting short of breath quite alot. I kept a spo2 meter handy to check my o2 levels when i felt breathless. i was also waking with a headache each morning so i think im having problems with co2 still in my bloodstream.
Jump to this month.
My legs and arms look very thin and my shins and ankles are just bone. However, i can still go onto my tiptoes. I am convinced my brachialis muscle on my left and right arms is completely atrophied. i struggle to do an exercise that uses this muscle. i cannot feel the muscle at all and there is a gap in its place. i can push my fingers right inside near my elbow.
i am now under a neurologist, he has noted that my left leg is now 1cm thinner than 6 months ago. right leg stayed same.
i have lost so much weight without trying. i am a bag of bones. i wonder how i am managing to walk around. many people have noted it.
My Neuro has noted that my right ankle jerk is absent and my left is weak, and my left bicep reflex is also absent, my right is normal.
This has freaked me out, i checked the nhs website what those meant and it is a problem with LMN lesion and they had ALS as the top reason on both ankle jerk and bicep reflex.
So now im worried that the EMG was done incorrectly or at the wrong time and i actually have ALS after all.
My arms and legs are so weak and wasted.
i am still having problems with my shortness of breath and bringing up lots of phlegm.
i cant think of any other reason why 3 of my 4 limbs has weak or absent reflex other than ALS being the reason.
I do not have any fasciculations and never noticed that i ever have.
i am still working as i have a desk job. im wondering if i have a slow progressing form of ALS as i am still able to walk after 2.5 years.
Does this sound like ALS.