ALS and why you DON'T have it!

[Kcguy2017]

Fishmanpa:

Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!

[Josh1234]

Fishmanpa:

Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!

It's taken from the ALS forum. It's credible.

[Kcguy2017]

It's taken from the ALS forum. It's credible.

Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.

[BazB44]

that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.

I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.

[Josh1234]

Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.

If someone is able to lift 100 pounds at the gym for 20 years then suddenly one day, they can't lift 100 pounds, they can only lift 50, is that not failing? Yes, it is. He failed to do a task his body can easily do for years (lift 100 pounds). In ALS quick paralysis does happen, but also a more gradual loss, but make no mistake, it's not subtle. Losing 40 to 50% of your strength overnight is a big deal.

When discussing diseases of the body, we go by what the overwhelming consensus says the pathology is. Fixating on an isolated case or two is what hypos do.

---------- Post added at 16:22 ---------- Previous post was at 16:18 ----------

that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.

I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.

Taking a long time to get diagnosed =/= having zero symptoms in that time frame. It can take months in between appointments to neuromuscular specialists, and when you give someone the death sentence of ALS, you make damn sure you've ruled EVERYTHING else out. That's why the diagnosis process takes so long..

[OutOfExile]

If someone is able to lift 100 pounds at the gym for 20 years then suddenly one day, they can't lift 100 pounds, they can only lift 50, is that not failing? Yes, it is. He failed to do a task his body can easily do for years (lift 100 pounds). In ALS quick paralysis does happen, but also a more gradual loss, but make no mistake, it's not subtle. Losing 40 to 50% of your strength overnight is a big deal.

When discussing diseases of the body, we go by what the overwhelming consensus says the pathology is. Fixating on an isolated case or two is what hypos do.

Sorry, I know this post is old but wanted to reply because this just happened to me and I think it will help anyone else who might have similar questions - I went to work out, tried to lift what I usually lifted easily, failed miserably. Lowered the weight quite a bit, failed miserably again. Wound up getting out my usual number of reps, but only at about 50-60% of what I normally do. No pain, just suddenly, shockingly weak in my left arm. I freaked out a little - painless, sudden, drastic, localized muscle weakness in a limb. Scary stuff, right?

So I went to an Orthopedist who specializes in upper extremities, decades of experience, offers EMGs as one of his provided services, and has his walls covered with autographed pictures of the professional athletes he has worked with (suffice to say, he knows his stuff). He checked me out. Diagnosis? No need for X-rays or MRIs due to lack of pain. No EMGs due to muscles working just fine during the exam. It's 90% likely to be a minor strain to muscles in my left shoulder, 10% possible viral infection. No working out my upper body for 4-6 weeks. Took him less than 15 minutes lol.

What I learned from him:
1. I didn't actually have clinical weakness - going through the strength tests, my muscles were firing fine, but when lifting at heavy weights I was perceiving my performance drop from a likely muscle strain elsewhere in the body as weakness. Struggling with weight is not the same thing as clinical weakness. Even if you're actually weaker in terms of lift strength or raw power, it's still perceived weakness until a doctor's looked you over and confirmed it to be clinical weakness.
2. Actual issue appears to be to the muscles in my shoulder, which I was again perceiving as being an issue only in my tricep/upper arm, because of the type of lift I was trying to do

I don't think the original post ever intended to say if you suddenly lose 50% of your strength that everything's fine and there's no need to see a doctor - I think the point is, that's not what's meant by failure/muscle weakness from ALS. The internet does an awful job of describing the actual presentation of the symptoms that get listed and read by folks with anxiety. And obviously by my own experience, we rarely even accurately interpret our own symptoms. Thought I was an obvious case of clinical weakness - wrong. Thought the weakness was a limb - wrong again. Bad interpretations by someone who isn't a doctor (i.e. me).

All this to say, I can confirm the original post ties with my own limited experience Hope this is helpful to someone out there!

[trheiress0305]

I just wanted to give everyone here some insight into my past and current ALS infatuation. I’m a 30 year old, former athlete, white male... in other words (aside from age), a prime suspect for your typical ALS patient. I’ve struggled with all of the same symptoms that I’ve seen listed by many of you. But, I also happen to be incredibly good at math. When my ridiculously hyperactive mind goes to ALS I remind myself that 4-6% of cases happen before the age of 40, and our normal chances are already roughly 2 in 100,000. Not to bore anyone with the actual number... But we are all way more likely to die from some pretty crazy situations other than ALS. So, when my thumb looks smaller than the other or when my legs feel like jello or my eye won’t stop twitching for 3 days straight, I think about the actual numbers and what my neuro always tells me... what’s rare is rare. Sometimes it helps, but others it doesn’t. I test myself like crazy. I google, I research, I do EVERYTHING I am not supposed to do... but I’m the end it always subsides eventually. Sometimes it’s days, minutes even. And other times it’s months.

[BazB44]

what about cramps and spasms? are they too later on, like twitches? or no significance? Lately ive been getting off and on spasms that can hurt.

[Fishmanpa]

Did you read the post?

Right at the top: ALS is about failing, not feeling.

Positive thoughts

[Kcguy2017]

Ugh. I was stupid and just read a bunch of posts on an ALS forum. I was doing so much better (mentally), and now I'm back to freaking out. Here's the really stupid thing. I can score a 10/10 on this sitting rising test (look it up on Youtube, I can't link it) and I haven't noticed any trouble lifting or squeezing things. Just some problems with my left ring and pinky fingers and perceived weakness and twitches all over. Irrational fear is a bi*^h.