Posts by briskotter15

fadednomad51 said:Checking back in. Like I said before, the diagnosis is specifically Great Depression—wait, no, let me be clear: it's ALS. I'm asking again: if anyone has dealt with this specific form of the disease, please, I need advice or information. Is there any cure? Any treatment that could possibly slow the progression? Thanks in advance...

I haven't come across that specific term before, or maybe I just missed it... from what I know (and I've scoured the internet for every single scrap of info), the condition is called ALS, or amyotrophic lateral sclerosis... they also call it Lou Gehrig's disease after the baseball player who had it... most regular folks just call it motor neuron disease, but I've never heard "Bulbar Palsy" used as the actual diagnosis... if you don't mind sharing where you read that, just so I can look into it... it sounds familiar, but I haven't seen it listed anywhere...

Supposedly Rilutek helped some patients, but unfortunately not here in the States... though that was like five years ago, and honestly, I'd rather stay in the dark than hear there isn't anything new out there...

How are you holding up? Hang in there...

fadednomad51 said:Thanks for the heads up. I'll try searching in English; hopefully, I can find something decent since there isn't much out there in our local language.

no problem, searching in English is definitely the way to go. too much to list out right now... just be ready, this disease moves fast. you really need to have everything prepared... if speech and swallowing are already an issue, breathing problems usually follow soon enough...

fadednomad51 said:It all started with her speech acting up. She went to see a doctor, and they found a tumor—everyone was convinced it was a pituitary tumor causing the issues. But once they did the surgery, nothing changed. The speech problems kept right on going, and now the doctors are basically saying there’s no link between the tumor and what she's experiencing. They're completely stumped. She's also been complaining about these minor muscle twitches in her arms and legs, though she can still walk fine for now. I don't know the exact wording on the medical report, but I'll ask and let you know.

those muscle twitches—the ones you can actually see—are called fasciculations. They're a pretty big indicator of ALS, or motor neuron disease...
honestly, just google it, google it, google it. it helps way more if you know English or German, since there isn't much info available in American...