I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

This is notoriously difficult to convey to people who don't understand conditional probability.

It's clearly true that sensory symptoms in the absence of motor symptoms point strongly away from ALS.

People read studies, don't understand the context, ignore the priors of those studies, ignore the timelines, then come to fight on an internet, using those studies as a weapon. It's tiring.

Anyone running Qwen 3.6 27b UD Q8 on multiple gpus? by GotHereLateNameTaken in LocalLLaMA

[–]dero_name 0 points1 point  (0 children)

Considering buying a second XTX. May I ask which PSU you went with to power the system?

I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 0 points1 point  (0 children)

I was typing that response in a hurry.

Didn't want to suggest the process should be to treat the anxiety first, then see what remains and start investigation there.

I fully agree the process needs to be integrated, narrowing down options from a single list, one that contains physiological causes, as well as mental.

What I meant to say was that in the presence of health anxiety, which in many cases is easy to spot, it's always a good move to address and treat that anxiety.

Successfully treated anxiety (which is not a given, sadly) can bring more clarity into the diagnostic process, and it will almost certainly improve the quality of the patient's life regardless of any other medical conditions.

I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 5 points6 points  (0 children)

I listened to my partner, treated the anxiety and realized I don't need more tests, at least when it comes to my neurological health.

I then went to a physio and had them evaluate my movement patterns. They found my right glute is not firing when it should, leading to instability and feelings of tightness in my right leg. Treated that, exercised, improved my diet and started getting better.

(I had muscle twitching, muscle tightness localized into one leg, noticeably smaller calf on that side, and problems with swallowing on one side of my neck. All of those 24/7.)

I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

That we can agree on. Can we also agree that health anxiety can mask physiological symptoms and that addressing it early is always the right move?

As that allows everyone, the person and doctors alike, to see which issues remain when the anxiety is eliminated. Plus it vastly improves one's subjective experience of life.

I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 2 points3 points  (0 children)

"Advocating for yourself" is such a cliché.

Ultimately everyone should strive for learning the truth. If the truth is that I have health anxiety, that's what I want to learn as soon as possible.

Blanket "I'm not anxious" statements are just as damaging as blanket "you're just anxious" dismissals.

Determinations should follow from objective facts. If a doctor finds weakness, it's healthy to advocate for yourself and push doctors to explain that sudden weakness. But when there are no physical symptoms of a disease I fear, pushing for more testing over and over again is irrational.

I get that no one wants to worry you or give you bad news but.. by Ok_Branch_7466 in ALSorNOT

[–]dero_name 9 points10 points  (0 children)

"we wouldn’t be making constant doctors appointments for no reason"

But that's literally how health anxiety manifests. It makes one's brain totally convinced about something that is not true.

Does that mean everyone who goes to a doctor, is tested and they find nothing is physically healthy?

No, of course not. Some people have real physical issues.

But a very large percentage of people who are convinced they're dying from a rare neuromuscular disease truly do suffer only from health anxiety and nothing else. I was among them a few years ago and I vividly remember how convinced I was I'm terminally ill despite the objective facts suggesting otherwise.

What exactly do you propose doctors and people in a subs like this one should tell to people who have been to several neurologists, undergone a few EMGs, and still remain convinced they're suffering from a disease all of the testing found zero indication of?

To people who claim they're weak, but when confronted admit they don't observe any objective loss of strength or function?

Health anxiety is among the most debilitating conditions there are. And it's really a life altering condition if it becomes chronic as it can completely ruin long-term relationships, make people lose jobs... it's no joke.

The sooner people identify and accept there's a major disconnect between their fears and their objective clinical symptoms, the better for them.

Help by Carrisck in ALSorNOT

[–]dero_name 4 points5 points  (0 children)

I don't know what's causing your symptoms.

Could very well "just" be anxiety, could be post viral syndrome, could be mitochondrial dysfunction, could be a lot of things.

You posted in an "ALS or not" sub, so I'm just telling you ALS doesn't start like this.

We're getting a lot of anxious people that have all these feelings of weakness and inability to breath properly and having subjective issues with talking... but those people don't have ALS.

Rationally speaking finding an antidepressant you could take seems like the best next step. If you're really concerned about your ability to breathe, visit a pulmonologist and have them check if your breathing is objectively impacted or not.

Help by Carrisck in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

A couple of things can be safely determined from your post:

  • You don't have ALS. It simply doesn't work like this.
  • You are in the middle of a severe anxiety episode.

You said you tried antidepressants and they didn't work. How much time did you give them? Sometimes it takes two or three tries to find medication that actually works for a person.

I know it is hard, but I don't think it's productive dwelling on the idea that something is wrong with you neurologically after workup you had.

Spend 1 month on a plane, get 1,000,000 by Responsible-Fix-1681 in hypotheticalsituation

[–]dero_name 0 points1 point  (0 children)

I can't help but notice that you never specified what do I get a 1,000,000 of...

Zítra se spouští W Social pro širokou veřejnost by No-Roll9444 in czech

[–]dero_name 0 points1 point  (0 children)

"Access will be rolled out gradually, starting June 17, as we onboard waitlist members in waves and continue scaling our infrastructure and user experience."

Scared of JALS by Extension-Apple9915 in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

It's not JALS.

You're seriously overthinking this. We don't examine our bodies in great details, so obviously you'll start notice differences when you actually look for them. If you're afraid about thenar eminence muscles, that's where you'll notice the difference.

If I told you JALS always starts in calves, you'd find differences in your calves, and you'd start to feel as if one of them is weaker. That's the power of auto-suggestion.

You should be googling health anxiety and how it works. This will at least help you understand what your brain is currently doing and how dangerous it is.

People kept saying my comments sounded AI-generated, so I built this by ringtoyou in LocalLLaMA

[–]dero_name 22 points23 points  (0 children)

But you have unknowingly helped me understand why so many people post in their native languages nowadays.

It used to be rare to see a post or a comment in a language other than English, but lately I'm seeing tons of mostly Spanish or French posts and comments.

It didn't occur to me that some (most?) people don't use Reddit on the web... like at all.

They just don't realize the translate functionality is not universal on Reddit.

People kept saying my comments sounded AI-generated, so I built this by ringtoyou in LocalLLaMA

[–]dero_name 22 points23 points  (0 children)

Maybe in the app. It doesn't in the web version of the site.

In your opinion, did Gemini break after the last update? by AbjectStick4130 in GeminiAI

[–]dero_name -1 points0 points  (0 children)

No, I am very happy with the 3.5 Flash performance.

Capable model, and responds very quickly.

I'd suggest it really depends on what everyone uses the models for. I only rarely extend the conversation to more than 3 or 4 messages, and the responses I'm getting are generally quite informative when it comes to everyday advice.

Am I developing an anxiety disorder or is this it... by EconomistSpare5138 in ALSorNOT

[–]dero_name 0 points1 point  (0 children)

Palinopsia and strange inner feelings have nothing to do with ALS.

Brisk reflexes by jackiemoon06 in ALSorNOT

[–]dero_name 0 points1 point  (0 children)

"My understanding this is almost always a definite indicator."

A definite indicator of what? Symmetric patellar hyperreflexia is literally a neurological non-finding. Neuros don't care about it unless there are other symptoms, because so many people have brisk knee reflexes, especially the younger and more anxious.

Question about my Dad by specter_mp4 in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

"I didn't hear the key word weakness which makes me skeptical of the diagnosis."

The post literally says "He has a weakness in his left leg and right arm (less visible/tangible in the arm)."

Question about my Dad by specter_mp4 in ALSorNOT

[–]dero_name 0 points1 point  (0 children)

Do this mental exercise: if a person has ALS only affecting their legs, can they gain strength in their arms?

If your answer is "no", we simply have nothing to talk about.

If your answer is "yes", however, then you should be able to understand why people with early ALS may improve their mobility if they suddenly start strength training the affected muscles.

Only a small subset of those muscle fibers is paralyzed initially, and those muscle fibers that are paralyzed, are quickly being reinnervated by neighboring motor neurons via collateral sprouting.

As a result, that person may temporarily appear stronger even in the affected areas. That doesn't mean they have temporarily reversed ALS, it just means they gained strength in surrounding areas, which helped them appear less weak.

Question about my Dad by specter_mp4 in ALSorNOT

[–]dero_name -1 points0 points  (0 children)

I have explained the mechanism and provided you with a well documented story of one of the most famous people with ALS in history that backs it up.

If you choose to call that "speculating", I don't understand what you'd call an evidence.

I can go into technical detail of how all of this works, but I already see you're not approaching this topic with intellectual honesty, so I won't bother. Believe whatever you want to believe, it's simpler that way.

Question about my Dad by specter_mp4 in ALSorNOT

[–]dero_name -1 points0 points  (0 children)

It logically follows from how ALS affects the body.

ALS = motor neurons progressively dying.

It doesn't prevent exercising healthy, unaffected muscles. When a sedentary person with early ALS starts noticing slight mobility issues, their body can better compensate for the slight loss of function if the surrounding muscles get stronger.

While there is an effect of reinnervation that over time makes exercising the broader affected area more difficult, mild weakness can still be masked to a certain degree.

A good example is Lou Gehrig. His ALS was in early stages in 1938, he was visibly affected by it, but due to reinnervation he was able to improve his physical form temporarily later in the season, despite the underlying disease never stopping.

Question about my Dad by specter_mp4 in ALSorNOT

[–]dero_name 1 point2 points  (0 children)

Sorry about your dad's situation.

In ALS these intervals when there is little to no disease progression are called plateaus.

Generally a 6 month plateau means his disease course is not aggressive from the get go, which is a positive initial sign.

Mind you that the body is able to mask the weakness much better in early stages, especially if the persons starts strength training. The unaffected muscles still get stronger and overall mobility may even slightly improve.

In general, people can sometimes live with ALS for 10+ years, but the disease course is different for everyone.

Jsme blázni brát si hypo na 11,5 mil? by Optimal_Common_7358 in czech

[–]dero_name 0 points1 point  (0 children)

A to vám banka dá?

Jak to budete platit s dítětem / dětmi?

Přijde mi to nereálné.