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Jaycee

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G'day everyone.

So it's coming up to a year now since I've first been on here - you can read my following threads (though I really don't advise this):
Another "Bulbar ALS?" Thread
Ongoing ALS concerns...

I am now a 30-year-old MD currently living in Australia. I know on my last thread I said I would see a neuromuscular specialist. However, due to a change in circumstances - moved to a new city, reluctance to generally accept what's happening to me, gaining more experience in my career, enjoying living abroad - I decided to "roll with it" and see what happens. I take full responsibility for this decision.

To be honest, all my symptoms that I have mentioned thus far had "plateaued" for a while, though still a massive change from my baseline. However, things have gotten worse over the last month or two since I went on holiday (included a couple of days of strenuous hill climbing, which I believe has accelerated my symptoms somewhat):

- I have hand atrophy (both look and feel "mushy"), and my right arm and forearm is now smaller than the left. Right pinky has become weaker. Piano and guitar playing has suffered. Oddly my lifting strength remains the same, but my body only allows me to gym once every 2 weeks now
- My swallowing is "hard" and is of the loud type by default now - I don't choke, but I can't swallow as much volume per gulp; my diet has been mostly junk to try and maintain my weight (have gained a bit in the process)
- My left ear is "clogged" which has persisted and not gone away with yawning
- My lower lip is weaker and have lost count the number of times I have to wipe my mouth when sipping coffee
- My speech is getting worse, I have to repeat myself a lot when talking to colleagues (I don't think it's my accent!)
- Breathing more laboured, feels like my chest is not expanding as much, and can no longer lie on my stomach because of this (which I'd always been able to do)
- Fasciculations remain widespread (including my abdominal and back muscles) and occur most of the time, they are much worse when cold or feeling stressed
- Fatigue (completely wiped out after work, as if I used up all my energy at work)

My EMG was not convincingly normal (despite the reassurance at the time) in the setting of "clear" MRI scans. Despite my background I did not query this further as I'd simply just wanted to get on with life - and I am not regretting this.

It's now gotten to a point where I'm reaching the end of my tether and need clarity, given the constellation of symptoms, a potential serious relationship (goodness knows how!), and with a pending new job interstate in a couple of months. I simply cannot plan my future at this point. I am still a person. This s*** is getting real!

I saw a PCP/GP who is genuinely concerned about ALS/MND now (given the progressive, persistence and constellation of symptoms) and will be seeing a neurologist on Monday who confirmed an EMG will be performed. You will almost certainly hear from me after then - whether I will stay or leave here once and for all.

In the meantime I feel pretty relaxed about it (despite me posting again), as work keeps me distracted and I am still performing reasonably well (not being too hands-on certainly helps!). However, I am mentally as ready as I can be to: hear those dreaded words, to pack up on my career and head home, to go travel and tick off that bucket list...

Thank you for listening and please do not feel obliged to reply to this.
 

Jaycee

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Joined
Dec 20, 2017
Messages
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Learn about ALS
Country
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Update as promised.

I have just seen a neurologist (who I know has diagnosed quite a few MND cases here, having myself looked after a few patients with MND over the past year) who does not feel I have anything sinister at this point albeit with some caveats.

The examination was less thorough than the first neurologist - but again thought there was no clinical weakness or atrophy. Didn't think there was any issue with my speech.

NCS was normal. EMG was only done on my right side (excluding paraspinals) - there was PSWs (within normal limits) on the same gastrocnemius as last time, with no fibrillations elsewhere. Full report awaited. My sternocleidomastoid was also tested which was "closest as you could get to bulbar EMG testing" but I think interpretation of that was limited as it was difficult to fully relax.

A single-fibre EMG (SFEMG) was also done which was negative. Still awaiting myasthenia antibody screen results.

My twitches were concluded as being BFS - which I was reassured by. Again a timely reminder to people reading that fasciculations on their own mean nothing. I then maintained my original concerns were "bulbar' to begin with.

My swallow and lip concerns (and "constellation of symptoms") were acknowledged and we did discuss a potential speech path referral but felt that given my current situation I should live my life as normal while I move again and start again with PCP/GP only if they do persist. I was also advised to work on any potential anxiety/stress in the meantime - which I thought had been, but I think I will now seek professional help with this.

At least, I can now move forward now with some kind of plan, though again I do not feel I am out of the doldrums yet, but that's life. I've just made a donation to the forum and will keep to my word and leave this site and put it on block. The only time I will post again is if I get a firm diagnosis.

Have a cracking Christmas and festive period ahead!
 

Nikki J

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Mar 22, 2012
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Congratulations and thank you for the update

Best of luck and Happy Christmas to you
 
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