Hi all,
I'm really, really sorry for posting again - my old thread got locked automatically which can be accessed here - https://www.alsforums.com/forum/do-i-have-als-als/40349-another-bulbar-als-thread.html
My current symptoms all remain or getting worse since this has started 4 months ago which are:
- Widespread twitching/fasciculations daily (difficult to look for small muscle wasting, as I've put on fat while trying to keep my weight stable)
- Difficulty swallowing mainly liquids/saliva - coughing several occasions a day from this
- Weakness of my hand muscles - finding it more stiff/difficult to write with pen/type accurately on keyboard
- Easy aching of thighs with minimal exertion (lasting days, which would never previously, on minimal exertion)
- An intermittent "dead arm" feeling over my left shoulder which hasn't gone away
I had an EMG last month which indicated "acute denervation" in both my calf muscles. I'm still able to walk on my tiptoes - but am finding this more difficult. I then had an MRI which showed some minor disc protrusions in L3/4 and L/5 only without any nerve compression.
The main reason I'm posting today is I've noticed now that my breathing is definitely becoming more laboured - particularly when walking uphill, and definitely noticed this whilst talking in middle of conversation, as well as a tight feeling on my chest.
While at work today I decided to do spirometry myself and I was shocked by the result - I now feel even more certain that I have ALS. Bearing in mind my age, no previous medical history, and baseline fitness levels (I ran 10km in 50 minutes just before all this started): [ FEV1 = 83%, FVC = 78%, FEV1/FVC = 109% ]. I remember having had one done 3 years ago (just for an experiment) and I'm certain they were both normal. This is clearly a "restrictive" pattern and given my constellation of symptoms - I'd think neuromuscular is the most likely cause.
At this point I feel I need to go back and see a neuromuscular neurologist soon. The rate at which my FVC may be falling, I don't want to be denied a PEG insertion before it's too late (if it does turn out to be this). I feel absolutely torn, just when I had my hopes up...
I'm really, really sorry for posting again - my old thread got locked automatically which can be accessed here - https://www.alsforums.com/forum/do-i-have-als-als/40349-another-bulbar-als-thread.html
My current symptoms all remain or getting worse since this has started 4 months ago which are:
- Widespread twitching/fasciculations daily (difficult to look for small muscle wasting, as I've put on fat while trying to keep my weight stable)
- Difficulty swallowing mainly liquids/saliva - coughing several occasions a day from this
- Weakness of my hand muscles - finding it more stiff/difficult to write with pen/type accurately on keyboard
- Easy aching of thighs with minimal exertion (lasting days, which would never previously, on minimal exertion)
- An intermittent "dead arm" feeling over my left shoulder which hasn't gone away
I had an EMG last month which indicated "acute denervation" in both my calf muscles. I'm still able to walk on my tiptoes - but am finding this more difficult. I then had an MRI which showed some minor disc protrusions in L3/4 and L/5 only without any nerve compression.
The main reason I'm posting today is I've noticed now that my breathing is definitely becoming more laboured - particularly when walking uphill, and definitely noticed this whilst talking in middle of conversation, as well as a tight feeling on my chest.
While at work today I decided to do spirometry myself and I was shocked by the result - I now feel even more certain that I have ALS. Bearing in mind my age, no previous medical history, and baseline fitness levels (I ran 10km in 50 minutes just before all this started): [ FEV1 = 83%, FVC = 78%, FEV1/FVC = 109% ]. I remember having had one done 3 years ago (just for an experiment) and I'm certain they were both normal. This is clearly a "restrictive" pattern and given my constellation of symptoms - I'd think neuromuscular is the most likely cause.
At this point I feel I need to go back and see a neuromuscular neurologist soon. The rate at which my FVC may be falling, I don't want to be denied a PEG insertion before it's too late (if it does turn out to be this). I feel absolutely torn, just when I had my hopes up...