Bulbar pre-clinical symptoms - seeking wisdom

[Gratefull_Man]

To start, I’d like to say that I am so incredibly humbled by the courage of the PALS/CALS community to navigate and live with what for most is an unimaginable hardship. You are all in my prayers. Your courage, and my own struggles living with a constellation of neurological symptoms that strike fear in me of developing MND have inspired me to seek ways to take action locally in support of the ALS community, at the cost of less time spent needlessly socializing with “Dr Google”.

As a quick background on me for context - I’m in my mid 50’s, with a history of good fitness and diet etc. High stress profession!
I have a putative diagnosis, from a nationally recognized neuromuscular practice, of -

1. Benign cramp fasciculation syndrome 2015 onset with calf fasciculations and myclonic muscle jerks while resting, and from Feb 2020 - body wide fasciculations, myclonic jerks, distal paresthesia (tingling etc), “globus”, and intermittent lightheadedness, and

2. Small fiber neuropathy, presumably from Feb 2020, which has been mild and largely length dependent (legs) (autonomic suspected).

I’m on board with the distinction between MND (weakness as a key clinical feature), vs non motor ailment symptoms (tingling etc). I currently do NOT experience any objective weakness.

What I am finding most difficult to navigate in my personal journey is the gap between what I am experiencing on the inside vs what is describable and clinically appreciated by a specialist. To that end, I would like to ask one question for feedback, if that’s ok?

My Question - For those who have experienced Bulbar onset ALS symptoms, what did it “feel like” in your throat and tongue, before you began to demonstrate the onset of classic symptoms such as slurring of speech, etc?

I hope you don’t mind me getting to the point of my outreach, quickly, and save you the complaining about a situation which is my burden to carry.

Thank you so much for any insights and wisdom you are willing share. I appreciate you, all. God bless!

 

[Bestfriends14]

Nothing. My husband didn't feel anything, he just started choking on water and his speech got slow and slurred. The speech came first and the choking came next. With ALS, one doesn't "feel" their muscles failing, they just fail.

It appears you have a diagnosis of BFS already, so I'm confident that my answer will suffice. Trust the BFS diagnosis.

Take good care.

 

[affected]

Same, my husband felt nothing in the early stages. Everyone thought he was drinking and he would have shocking trouble swallowing water, it would spray across the room. He felt perfectly normal.
Just as we say in the sticky note.
It is FAILING not FEELING.

Apart from that we do not describe further, as our experience is that you will imagine you start experiencing it.

We also won't argue against neuromuscular specialists. If you don't believe them, get a second opinion for sure.
All the best.

 

[Gratefull_Man]

Thank you both for your responses. I greatly appreciate it! Be well