View Single Post
Old 01-30-2018, 07:44 PM #7 (permalink)
Jaycee's Avatar
Jaycee Jaycee is offline
New Member
 
Join Date: 2017
City: --
State: --
Country: Aus
Interest: I am interested in learning about ALS/MND.
Posts: 10
Jaycee is on a distinguished road
Jaycee Jaycee is offline
New Member
Jaycee's Avatar
Join Date: 2017
City: --
State: --
Country: Aus
Interest: I am interested in learning about ALS/MND.
Posts: 10
Jaycee is on a distinguished road
Default Re: Another "Bulbar ALS?" Thread

Hi all, just an update having just seen my ENT - he didn't really say anything useful other than ordering a barium swallow (which frustratingly I have to wait for another month) and thought my vocal cords looked mildly inflamed.

More concerning though however is that during this month I have developed more symptoms:

- I have lost strength of both my ring and pinky fingers. They just... happened overnight one week after another. Those fingers have become very stiff and tremulous (not the others). Playing guitar is an immense struggle now. Even writing and typing on keyboard is noticeably more difficult. While I can curl them ok I feel like its the larger muscles enabling to curl rather than smaller hand muscles.
- Soft palate feels to be very weak, with sensation of fluid coming up to back of my nose sometimes, even when swallowing saliva. When I exhale through my mouth, my breath sounds noisier. My uvula appears to touch the top of my tongue when I close my mouth (without gagging).
- Feels like I'm pooling saliva in my mouth - having to consciously swallow my saliva.
- Fasciculations (visible) have developed all over including my shoulders and forearms which I've never had before.
- I am continuing to cough after drinking thin liquids, as well as constantly trying to clear my throat to be heard when I talk. My diet consists of porridge, home-cooked burgers and nutritional supplements.
- Legs feeling weak (at the thighs), with probably some muscle wasting.

In all honesty, I've more than resigned to accepting my fate here so I will now try and get seen urgently by neurology, once I clarify my eligibility for life/crit illness insurance (I'm currently living abroad). In the meantime still trying to work and live as normal!

PS I do have a medical background, so I feel reasonably rational at this stage.

Will keep you posted.

Last edited by Jaycee : 01-30-2018 at 07:58 PM
Jaycee is offline