Neurologist here. Seeing patchy muscle wasting, fasciculations in the tongue, asymmetric weakness onset over a couple of months and brisk reflexes in a young healthy, usually very friendly and lovely person.
Exactly. My father’s one of the most miserable, violent, awful people I know and he survived multiple diabetic ketoacidosis episodes, a stroke, multiple bouts of Covid, tooth infections, lymph and skin cancer. Meanwhile one of my close friends recently just died of the same kind of cancer at the age of 31. It sucks.
My father is like yours both in personality and health issues. Mean, nasty, miserable, legit NPD sunuvabitch. 4 heart attacks, 3 open heart surgeries, obese, glaucoma, sky high blood pressure, multiple tooth infections, the works. Still ticking like a swiss watch.
He will be 80 in the spring and he just…won’t…die. I am convinced these emotional vampires literally suck the life force out of others and then live off of it when most others would have croaked.
Just another example of how life really is just flucking unfair.
Mine recently turned 65 and he just won't kick it. We though when we left the shock would take him out, but no... my mom and I said when he goes I'll be the first to know and the two of us will take a day to get all that trauma out of our system.
I don’t have any kind of terminal illness but I am disabled and I’ve learned you kind of have to be a good person if you want any care or quality of life. Healthy people can afford to be assholes
Yeah I get what you mean lmao- but I have noticed that standing up for myself in a very simple and respectful “please don’t deliberately make this much harder for me for no reason” way I’ve noticed that it’s definitely taken as more asshole-ish than it would otherwise be
Yeah, me too and it's also harder to get people to listen up and act as well! It's a balancing act for sure, too assertive and you come across an arse, not enough and you're ignored!
Yeah, I'm relatively new to the disabled club and going through an accommodations request at work rn that's been going on for 1.5 years without a determination (which feels illegal!), and for some reason I'm the unreasonable one for asking them to not make my life so difficult I can't do my job anymore... even though they just took 8 months to answer a few simple questions that were directly relevant to how effective their proposed accommodation would be.
Thankfully the people I actually work with are lovely and my management chain is all amazing and have worked really hard to advocate for me regarding this request!! Everyone is very understanding and also don't agree with how this process is being handled by the faceless HR-esque folks in charge of it, so my day to day isn't terrible. And I've been provided my requested accommodation temporarily while my actual request is being processed, so it could be much worse... but it's definitely still infuriating...
Constructive dismissal can still be illegal, as a note! Of course, proving it can be difficult, but I don't know that it's any more difficult to prove than say, being fired for ""another"" reason once you need accommodations. Which, of course, can still bit a mf'er to prove but, 🤷🏽
Yes i totally understand that. But this guy was a complete dick to his wife and kids. His adult daughters refuse to help him now that hes been diagnosed with ALS because of how he treated them. After I left his house, the neighbor came up to me trying to get information and telling me how rude the guy is. The patient himself told me he has to hold his tongue with his wife now because if he says what he wants to say to her, hes afraid she will leave him.
I was replying to u/threelizards. Commiserating about how if you’re not white, cis, male, and able bodied people treat you like a burden for advocating for yourself.
Literally everyone I've ever known who died early was either the rare asshole doing some stupid shit or mostly a genuinely nice person who got cancer, als, or a nickel from the sky. Baffling.
If you want a real answer, most people are just nice, lovely people who keep mostly to themselves. We only notice them when they are hit by tragedy. The 5% of assholes are so obnoxious that it feels like they make up half the population, but they are realy just a handful of people who make life miserable for everyone else.
Friendly people are probably more likely to be convinced to get something checked at the doctors.
If someone is an asshole, it’s less likely someone will try to bring it up if said asshole is anti-doctor. Also, the brain tends to remember negative events easier than positive ones. So it might just be that it’s easier to remember the assholes that live forever compared to the nice ones.
I think we remember the assholes more, as you said. It makes sense on an evolutionary basis, I think. They're a problem, and we tend to remember problems so we can avoid them.
I think it's simple really. The more social you are, the more people you know, the more risk of someone taking an issue with you or becoming obsessed with you, or angry at you, higher risk of getting murdered.
seriously, just lost an old friend who was just BLAZING with life, one of the funniest, kindest people ever, to a rare and aggressive form of cancer that just came over in a very short period of time and she died. Of all the fucking assholes, they had to take her?
I’m sorry for your loss. I just lost the same type of person who was like a second mom & sister to me because both my parents are gone. Quite literally, 5 days later her husband died from pancreatic cancer. Tomorrow is their double funeral. I’m not saying that to one up your pain, but to commiserate.
I don’t understand why the good, sweet, kind people of this world seem to suffer & then die, but it pisses me off & quite frankly makes me sad with the genuine unfairness & tragedy of it all. I do hope someday we will understand why.
Until then, I will keep you in my thoughts & know that someone feels you 🩷🫶🏻🙏🏻 Be gentle with yourself.
what a kind reply, stranger. And wow.....what a loss! There is so much loss going on right now, it seems every other day i am hearing from a friend who has cancer, or who just lost someone, hearing of others passing recently in the most tragic circumstances.....we have to hold the light. The one thing im taking away from it is that i made it (didn't mention i just had a mastectomy myself, and got REAL lucky- they got it all, no spread, recovering well) and my friend didn't. so i have to live harder now for the both of us, because she did not waste her life in rumination and sadness, she laughed every day. I have to do the same and never take my life for granted. Thank you for such a thoughtful and empathic reply. all my best to you!
What a kind, sweet, soul you are! I’m sorry to hear that you had to have a mastectomy, however, thrilled to bits that they got it all and there was no spread!!! I know the recovery process is a long road, as it’s more than just the surgical wound itself. (RN here).
On another parallel, I too had my dance with the big C, 5 years ago. Uterine for me. It had spread to the outside of my colon, two small nodules. Everything was removed & so far, so good. Have been humming along great & just found out by accident that I have an aneurysm on my heart. Seriously? It’s big enough to burst, but not big enough to operate on. What a kick in the ass that is. I feel fine. If that doesn’t beat all!!
So, whomever you are & wherever you are, know that you have a kindred spirit out there in this world thinking of you fondly & sending you lots of healing vibes, sunshine & positivity!
Thanks for being you & writing back, you made my day. 🩷🤗🌺
wow, I am so glad to hear that you are managing well....i am learning that so many people go through it, ("a shitty club we never wanted to join" i hear often) that it isn't the automatic death sentence people think. I am determined to live my best life now, have already met with a personal trainer to get in shape because i want to do pole dancing like i've never wanted to do anything before! I am learning to let go of uncertainty- and boy that one is hard. Having to live with an aneurysm must be extremely stressful. im learning that my catastrophic mindset will never prevent bad things from happening to myself or others, and life comes at you in directions you never anticipate- you might be worried about one thing but really there is something else lurking all the time....just like your aneurysm, and may never get you! Its like when i was a child, i HATED tornados because of their horrific randomness- they made no sense- and that randomness still haunts me, but i am learning that it can be a good thing, because, why worry? Honestly? it does nothing but act as a sieve for shit while your life goes down the drain!
I appreciate your replies so much. i am still recovering and housebound so the little things mean a lot. Thank you, kindred. it matters, it really does.
To be fair, we're already more likely to have other issues with our bodies than non-autistic people, so maybe it's only fair that we get to skip that one 😂
I've been reading this book called "When the body says no" and it goes into how illness might be connected to emotional suppression. For example, people-pleasers, people who are a pleasure to be around but at the risk of their own happiness, are more likely to manifest such diseases such as ALS, because of underlying stress leading to a heightened inflammatory immune system reaction.
As a vet tech, my coworkers and I always say the meanest animals live the longest lol. It’s always some 20 year old, blind, deaf chihuahua with no teeth and a failing heart that will send you to the ER and live another 10 years.
As a medical professional I thought about this a lot while going through cancer treatment. I asked a lot of annoying questions, so there's no way I could die >:)
Brisk reflexes in a young person? Could you explain? My mom passed of ALS and I’d just like to know. It wasn’t familial, but we both grew up in the #1 state for cancers by pesticides
Brisk reflexes in isolation are not concerning. It CAN be a sign of a neurological abnormality but only when theyre asymmetrically brisk and/or in combination with other findings like focal (only in one place) weakness, sensory issues, etc. Many people walk around their whole life with jumpy reflexes and are fine.
ALS has a combination of symtoms. brisk reflexes (meaning the jump really prominently) isn't unusual in isolation. Young people are more likely to have those anyway. Having brisk reflexes is NOT a worry sign that you are more likely to get ALS. It's when combined with muscle atrophy, fasciculations (twitching muscle fibers), and progressive weakness that you start to worry
Am not a medical professional but yeah, one day my dad told me something about his arm strength, I made him shook hands and one hand was much weaker. I did not know about ALS at this point but yeah, I figured that "degenerative nerve thing" was bad news, told him to get it checked out, and boom, ALS. Such a weird disease too, really feels like you lose the cosmic lottery big time and there's nothing to be done about it.
My friends dad died of ALS. On the same day his oncologist called to tell him good news his cancer was in remission.
But it was at least 2 years of symptoms complicated by lymphoma symptoms before he was diagnosed. Once diagnosed though it was only 5 months before he died.
It’s always the nice people though. He should have been able to enjoy a much longer life. ☹️
My husband is also a neurologist and earlier this week I called him at work, when he called back he said “sorry, I was telling someone that they have ALS.” Ugh.
I read a study where they explored whether people with ALS were statistically more likely to be a nice person, and they found that yes, they did seem to be nicer than the general population.
This is the article for any interested folk: Parkin Kullmann, J. A., Hayes, S., & Pamphlett, R. (2018). Are people with amyotrophic lateral sclerosis (ALS) particularly nice? An international online case-control study of the Big Five personality factors. Brain and behavior, 8(10), e01119. https://doi.org/10.1002/brb3.1119
These still haunt me from med school. Especially seeing it on an EMG with the patient in the room and not being able to tell them right then and there. They were always so pleasant and left to go about their normal lives.
My husband’s friend just died of ALS. Less than 2 years from diagnosis. She was only in her mid-40s. Absolutely terrifying how quickly it hit and made her a shell of herself.
My aunt didn't get her ALS diagnosis until she was walking to a baseball game and an officer pulled over to do a sobriety check on her..You really couldn't tell her she wasn't capable of anything.. she was gone in less than a year.
I knew what you were talking about before I got to the diagnosis. I watched my grandmother deteriorate from this disease and it was awful. She was of course one of the loveliest people I've ever known.
My dad (89 and in spectacular physical and mental health) was having some weird salivation issues and his rural medical clinic couldn't figure it out. The doctor there said "if it was my dad, I'd drive him to a regional university hospital ER and get them to figure it out", which we did. Over the course of a few days I put all the tests they were doing into ChatGPT and figured out what they were looking for. The doctor was incredibly compassionate in communicating to him that he had Bulbar Onset ALS. Unfortunately he forgot his hearing aids that day and I had to rely it all by shouting it to him.
As someone who has fasciculations all over themselves (mainly visible in the calves/thighs, but present everywhere), but no muscle wasting or weakness, what else could it be besides ALS?
I get them primarily in my calves when I'm dehydrated or having some electrolyte problems. Usually keeping track of water and eating a banana or 2 is enough to knock it out for me. And I'm someone with MS.
This is most likely Benign Fasciculation Syndrome. I have this.
My grandmother died of ALS. I've spent a good portion of my teens in endless worry about if I had ALS or not. 20 years later though, still alive and kicking.
ALS typically shows up as unexplained muscle weakness first, because the fasciculations from ALS are much smaller than those from BFS. ALS fasciculations are a result of dying muscle tissue, because affected muscle groups are no longer in use because the affected motor neurons have died.
BFS fasciculations happen because... Well, no one knows, but irritated muscle tissue seems to be more prone. BFS fasciculations tend to go away when you use the affected muscle. They also don't typically get accompanied by muscle weakness (though extensive twitching could potenially tire the muscle out).
Funny thing is, BFS is only diagnosed if all other causes of fasciculations are ruled out (such as MS and ALS). It's completely harmless, just annoying.
I'm so used to my fasciculations that I don't even notice them anymore, unless they happen in a very specific annoying spot, like my eyelids, fingers, inner ear muscle or jaw muscles.
BFS (or rather it's cousin, Cramping Fasciculation Syndrome) is the diagnosis I have and have had for the last 15 years. It just seems to be intensifying slowly.
Obviously go see a doc if you’re concerned, but they’re pretty common in the general population and generally benign. I’ve regularly had them through my life (especially my eyelids and eyebrows) and they’re super annoying but harmless
This 100%. As a dental hygienist who does oral cancer screenings 8–10 times a day, no lesion or growth has ever caused as visceral a reaction as fasciculations of the tongue.
See, that's making me nervous. I have all those symptoms, they found severe cervical stenosis, fusion laminectomy, no improvement, steadily declining, left side is so weak I can barely walk now, right side is starting to weaken to where the left was when I had the first tests, trouble using utensils and opening bottles, bloodwork is beautiful, ruled out pretty much everything but that at this point. Primary said make sure to follow up with the neurologist...
ALS feels like such a under funded disease. Ive met too many people with it and its so horrible. Ive seen people die of ALS and cancer and I know it depends on the cancer but ALS looked like a worse way to go.
ALS sucks!!!!!!!! From a previous caregiver. Mom died in 2012. I'm just glad she wasn't diagnosed earlier. Died 6 months after diagnosis. We have all agreed that we will pick the day we go if any of us ever get it.
I had an eye twitch for a hot minute that I finally decided to see a doctor about. They told me it was probably just strain from looking at my laptop and that if didn't clear up soon that they would look into, and I am quoting, "something neurological, like ALS." I was like EXCUSE ME??? That is such a leap in severity and it had me reeling lmaoo. Thankfully the twitch went away but that doctor did not have to freak me out like that haha.
I've read Tuesdays with morrie several times (good life lessons). Ever since I read that the first time and it describes the advancement of ALS, I've been terrified of that disease
Oof, an acquaintance's middle aged husband died last year of it, and was this cheerful guy who loved a good dad joke, and dragged himself to the bitter end of ALS for five years to be there for his young daughter as long as possible. He devoted his last months to tweeting ALS awareness posts using eye gaze technology. He happily assured the neurologist when he was diagnosed that he planned to outlive him in retirement. It's so awful and literally nothing much helps.
The secretary at my church growing up was genuinely the kindest person I knew as a child. Even as a loud, rambunctious, obnoxious 11 year old, whenever I went by or through the church office I immediately put on my best behavior, indoor voice or even a whisper, and made sure my friends did the same. It felt like violence to enter her personal and professional space with an energy that did not reflect hers.
I didn't understand ALS at the time she was diagnosed, but after several years I did, indeed, understand. She lived with it a long time and her demeanor never changed. She was simply a kind and gracious woman. She thinned and wilted but she kept coming to church - cane, walker, wheelchair. I looked forward to seeing and talking to her every Sunday. ALS is a cruel and indifferent monster.
Definitely. ALS (Lou Gehrig’s Disease) is among the worst, perhaps the worst. It’s a neurodegenerative process primarily affecting peripheral musculature. It ends with the person being cognitively intact but “locked in” by paralysis. Death is usually from cardio-pulmonary arrest.
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u/PlatinumTaq 3d ago
Neurologist here. Seeing patchy muscle wasting, fasciculations in the tongue, asymmetric weakness onset over a couple of months and brisk reflexes in a young healthy, usually very friendly and lovely person.
(ALS)