Living with ALS: Support and Advice

I’m reaching out here hoping someone might have some insight. Someone very close to me was diagnosed with a pituitary tumor, and she went through surgery shortly after to get it removed. I should've mentioned that before the diagnosis, she was struggling with speech issues—which the doctors linked to the tumor. They genuinely thought everything would return to normal once the tumor was gone. Instead, things just spiraled. Her speech got progressively worse, becoming more incoherent every single day. It was heartbreaking to watch. She spent a year and a half bouncing from specialist to specialist. They even sent her to psychiatrists because they assumed the issues were psychological. A year and a half of pure misery, and nobody had a clue what was actually happening until she finally saw a doctor who gave her a real answer. It turns out it's ALS. Now, she can't speak at all. Every day, swallowing becomes harder. It feels like we're just counting down the days. If anyone here has any information on this disease, if you've dealt with it personally, or if you know of any treatments that might slow the progression, please, anything helps. I'm desperate for some kind of lead.

How did the weakness first manifest? Did she experience vision issues or trouble swallowing initially? Is she still able to walk? There could be several different conditions where muscle weakness occurs because the nerve impulses are being interrupted or weakened at some level... What does her official diagnosis say on the medical records or discharge papers from the hospital? Could it be Myasthenia Gravis?

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.

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...

briskotter15 said: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...

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.

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...

You seriously need to check out this site http://home.goulburn.net.au/~shack/.
Seriously, go look!

slyhound5 said:You seriously need to check out this site http://home.goulburn.net.au/~shack/.
Seriously, go look!

Thanks. There's a ton of info here. It was actually the first page I stumbled upon where someone actually shared their real experience.

fadednomad51 said:I’m reaching out here hoping someone might have some insight. Someone very close to me was diagnosed with a pituitary tumor, and she went through surgery shortly after to get it removed. I should've mentioned that before the diagnosis, she was struggling with speech issues—which the doctors linked to the tumor. They genuinely thought everything would return to normal once the tumor was gone. Instead, things just spiraled. Her speech got progressively worse, becoming more incoherent every single day. It was heartbreaking to watch. She spent a year and a half bouncing from specialist to specialist. They even sent her to psychiatrists because they assumed the issues were psychological. A year and a half of pure misery, and nobody had a clue what was actually happening until she finally saw a doctor who gave her a real answer. It turns out it's ALS. Now, she can't speak at all. Every day, swallowing becomes harder. It feels like we're just counting down the days. If anyone here has any information on this disease, if you've dealt with it personally, or if you know of any treatments that might slow the progression, please, anything helps. I'm desperate for some kind of lead.

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...

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...

The neurological report came back after some private EMG testing, and apparently, the results align with a developing case of MND. This individual has been on a blended diet for about a year now,
and they're completely unable to eat anything else. On top of that, they’ve been bedridden for four years, dealing with constant pain and spasms in their face, arms, legs, and everywhere in between—it's just relentless. Is there any glimmer of hope left here?

I keep reading these grim statistics saying people pass away anywhere from two to five years after diagnosis, though sometimes it stretches to ten. Interestingly, despite struggling to breathe for years, they haven't actually needed a ventilator yet, which feels like
another layer to this, especially since they also have a severe form of myasthenia gravis. I know there’s talk about stem cell therapy for ALS, but let’s be honest, the cost is absolutely astronomical.

😢 😢 😢

wanderingpanther68 said:The neurological report came back after some private EMG testing, and apparently, the results align with a developing case of MND. This individual has been on a blended diet for about a year now,
and they're completely unable to eat anything else. On top of that, they’ve been bedridden for four years, dealing with constant pain and spasms in their face, arms, legs, and everywhere in between—it's just relentless. Is there any glimmer of hope left here?

I keep reading these grim statistics saying people pass away anywhere from two to five years after diagnosis, though sometimes it stretches to ten. Interestingly, despite struggling to breathe for years, they haven't actually needed a ventilator yet, which feels like
another layer to this, especially since they also have a severe form of myasthenia gravis. I know there’s talk about stem cell therapy for ALS, but let’s be honest, the cost is absolutely astronomical.

😢 😢 😢

Look, I'm neither a urologist nor a neurologist, but I am a physician. Since I spent quite a bit of time looking into ALS a few years back for entirely different reasons, I went ahead and checked to see if there had been any recent breakthroughs. I came across two specific medications that can extend life for those living with this disease: edaravone and riluzole. I'll leave it to you to dig into the finer details of how they work. But what I absolutely have to emphasize is this: those drugs are exactly like hope—they aren't a cure, they just buy you more time... get it?

I’ve heard that Riluzole doesn't really buy you much extra time, though I suppose it’s still worth a shot—thanks for sharing anyway. 👍

Look, I remember reading this one deep-dive article back in 2016 that explicitly stated, "given that ALS remains incurable, prospective studies into potential therapies haven't really seen significant movement since the 90s." I don't have the link to the piece anymore, but as you can clearly see, five years down the line, it feels like absolutely nothing has changed.

Honestly, you’d need to get an actual neurologist to weigh in if you want any real answers on this.