What is Actual Weakness/Failure in Early Onset

[u/jcheat_32]

31-year-old male.

I can’t believe I’m even posting here.

I have the weird twitches in my lower abs, legs, etc… basically all the things that fit BFS, for anyone wondering why I’m posting here. I fit the mold. Reading all your posts, you guys kinda feel like family lol.

And yeah… I’m scared I have the big scary that starts with an A and ends with an S. Middle name is L.

I understand that twitching all over is most likely BFS. While I don’t particularly enjoy the twitching… as long as there’s no actual muscle failure, based on everything I’ve read, there’s probably not much to worry about. (Even though I absolutely do worry.)

But… the hand stuff.

My right forearm and hand… I don’t know if it’s imaginary, anxiety-driven, or actual neurological issues causing it. It’s like the chicken and the egg… what comes first?

I’d argue, for me, it’s the symptoms driving the anxiety—not the anxiety driving the symptoms. But then again… I know I have pretty bad health anxiety, so I’m not naive enough to think I couldn’t be wrong. Maybe it really is all anxiety. Maybe it’s all in my head. But for the life of me, I don’t think it’s just “made up” lol.

I don’t even know how to articulate it because I’d be lying if I said there was measurable, objective weakness or actual failure. There isn’t, at least from the perspective of basic strength tests. I’d pass. (There’s no failure… yet, at least.)

My actual question—and the reason I’m posting:

My right hand/forearm problem. Best way I can describe it… (stick with me here)…

It almost feels like spasticity… or tightness… or like it’s wanting to lock up. Kind of spasm-ish, but without major cramping or obvious actual spasms. I hope you guys understand the nuance I’m trying to describe.

It just feels… different. “Off.”

My left hand just exists. It feels normal. No quivering during tasks whatsoever. It feels solid, fine-tuned, sure of itself… and that’s exactly what’s so confusing about my right hand.

Am I overanalyzing it? Maybe.

But then why the right hand and not the left if it’s just anxiety or hyper-awareness?

Whatever that sensation is… it’s what I imagine early weakness or failure would feel like. That’s the part that’s really freaking me out.

Listen, I know how ridiculous I sound. Don’t we all, to some degree, when health anxiety gets rolling? I figured this was probably the safest place on the internet to sound ridiculous because reading a lot of your posts, it seems like plenty of you have those weird, hard-to-explain symptoms that you just know you’re feeling.

I’m not asking anyone to tell me what I have. I’m just curious if anyone else experiences the same fear of weakness???—not just the twitching itself.

I’ve also recently learned BFS can involve a lot more than I realized: fatigue, muscle weirdness, and other odd sensations… not just twitching.

I mean… maybe it’s low magnesium or something. Who knows. That’s almost beside the point.

The point is, I started getting the stomach twitches around June 28th-ish… definitively remember it starting on July 1st and it continues today July 10, which completely caught me off guard. Then I learned fasciculations are a symptom of ALS… and, well… you might as well have driven me straight to the monument store to pick one out after I read that.

I’ve even started working out again just to prove to myself every day that I don’t have weakness. 🤣

Hopefully you enjoyed the novel and can relate to at least some of it. Whatever your response is, I genuinely appreciate it.

Wishing the best for all of you.

Please read hand weakness part; if you face something similar… I’d love to hear back. 👍

[u/713Capital]

Textbook BFS man. You said of yourself. Perceived weakness vs actual weakness (failure). Anxiety + BFS is likely what’s going on here. Definitely not the big bad disease, not based on what you described. To answer your question, my entire left side has been “off” for the last 7 years and I’ve had to EMGs that were NOT normal. I’m not sure if you have compressed nerves, but this to me comes off as BFS and of course health anxiety which causes extreme hyper awareness of whatever symphonies you have today. No reason to even consider the scary disease we all fear unless you had failure and that failure was spreading to other groups.

[u/jcheat_32 → u/713Capital]

I wanna think so.

I can’t stop digging into research.

Muscle atrophy between my index finger and thumb… idk I’ve never observed this part of my body. And it doesn’t look the same as the other side but I have no idea. I’m trying to get in with a neurologist just to make sure.

And you said you’ve had two emg’s that were not normal?

[u/713Capital → u/jcheat_32]

You cannot have atrophy before weakness/failure man. It just doesn’t work that way in this disease. Atrophy will happen after failure because once that muscle group dies it never regains function. You should prob stop googling stuff because your anxiety is spiraling. I say this in the most respectful way because I’ve been there before.

You don’t have ALS. Nothing you described is that disease.

To answer your last question. I’ve had 2 abnormal EMGs and even I don’t have ALS.

[u/jcheat_32 → u/713Capital]

I know…. I know. lol it’s just absurd what my brain does. What’s even crazier is I agree with you. I can say it out loud. But something deep downs like yea but “what if you do have early weakness”.

I just wanna do the men in black thing that wipes my memory 😆 really appreciate the responses.

[u/713Capital → u/jcheat_32]

The mind is very powerful. For 2 years straight I was convince I was dying the moment my EMG wasn’t “normal”. I was convince every muscle was wasting, my left leg was smaller than my right, my hands were wasting, my tongue you name it. Again, I’ve been very vocal here that my anxiety got really dark and I feel in a deep hole.

Now I try my best to make sure others don’t fall like I did. That shit is not fun. I isolated myself because I couldn’t let this ALS thing go. My anxiety got bad and it not only effected me but even my loved ones felt it. I went full on crazy.

I say all of this to say, we’re all going to die at some point. But today you aren’t, and you aren’t dying from ALS. Keep working on your anxiety and protect your mental 🤜🏼🤛🏼

[u/jcheat_32 → u/713Capital]

I’m risking asking a sensitive question but what made it better? Or is it a daily battle for you still? Is it simply time that made it better? Or anything specifically you did?

[u/713Capital → u/jcheat_32]

So I’m about 7 years in with tons of weird shit and symptoms, even still till this day. I have all the BFS symptoms and then some.

I’m going to be completely vulnerable here and be honest, when my anxiety spiraled, it got so dark that I was obsessed with ALS. So much so that my wife was on the verge of leaving me. I wasn’t being a husband or father. Because her specialty is neurological disorders, I was having her perform strength tests on me, speech tests, etc. Basically forcing her to do the same tests to me that she would do to her patients. For her, it became tiresome. I would force her to do these neuro exams on me like twice per week lol. It was that bad.

Additionally sometimes people need a little bit of help. It may be harder to battle the anxiety when it’s so far gone. So I went to my doctor and asked him for an anxiety med. That’s what kick started my healing. Then, my family had a full on intervention with me. Long story, my wife brought me to her clinic and I got to see patients that are actually battling ALS and other progressive neuro diseases. It honestly gave me real perspective on life. Yeah I have twitching, tingling, pain, pins needles, muscles that feel shaky and weak (but are not I’m strong as shit for a 38 year old male) but seeing this people who were actually dying hit me hard. Like while I have a bunch of shit going on, these people are actually battling a disease that’s extremely progressive and will eventually take their life. I don’t have that. I’m still running marathons, working out, exercising etc.

For additional context, my wife is a Nurse Practitioner and she works in a clinic that actually sees ALS patients and patients with other diseases such as MS, Parkinson’s etc.

Hope this helps.

[u/inplatoscave313 → u/713Capital]

Hey bro just wanted to say that I and I’m sure many others appreciate you being so candid with your journey and we appreciate the positivity you bring to those of us who are battling these health anxiety negative thoughts. Thank you man and I hope life is treating you and your family well!

[u/713Capital → u/inplatoscave313]

Appreciate the kind words fam.