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Jaycee

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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...
 

lgelb

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Well, setting aside possible operator error unless you do spirometry professionally, as you know "normal" = 80% + and your ratio is more indicative of fibrosis than anything else (if anything), so I don't see why you're hitting the panic button IRT ALS.

I would get the test repeated by a real tech and if indicated get a chest CT.

All the feelings you have described continue to be just that -- feelings, not failing. As you have read, we discount those because in our combined experience they are not generally descriptive of ALS onset.

Not knowing anything about your diet, sleep, stress, hydration and exercise regimens, I'm sure with a medical background you might find some areas for possible improvement, including some focus on your legs to test the hypothesis that any mild radiculopathy can be improved, e.g. with focused massage or even PT as well. Seated and sleeping positions always bear a look for possible postural improvement as well, with mild disk issues.

Rereading both your threads, I feel like you are chasing ALS, and I don't know why. You're 29, and your EMG showed no chronic denervation, if I understand correctly. You're still going to the gym, working, and typing. If your symptoms persist, you might consider resetting, back at the PCP level, with some bloodwork to look at some possible systemic deficits. But you're in the wrong place here, and that's great news.

Your last thread suggested your willingness to consider and work on possible anxiety as an etiology. That is a testable hypothesis as well.

Best,
Laurie
 

KarenNWendyn

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I agree with Laurie. Until you see a neuromuscular disease specialist, you are very likely driving yourself nuts with worry which is probably all for naught. It’s easy to pick the worst case scenario, focus on that, and convince yourself that is your fate. Meanwhile, there are so many much more benign possibilities.

Do see a neuromuscular specialist, but meanwhile I would caution you against testing yourself and trying to self-diagnose.
 
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