Terrified this is ALS

[cd759]

Hello all,

First, let me say thank you for the replies in advance. For context, I am 28 yo male. So about 8 years ago, I became convinced I had ALS. I was 20 at the time. Felt an odd sensation in my arm and fingers and noticed twitching all over my body, Googled it, and down the rabbit hole I went. I had a clean EMG in the summer of 2016 which helped a bit.

Around 2018, I had another panic attack about it and I again began constantly self testing. I ended up testing my thumb so hard that I strained the muscle that brings it up (like a thumbs up) and it got VERY weak. Like clinical weakness. However, over the next few days it got better and my strength returned. Around this time, I also experienced spasticity in my thumb muscle upon waking up. It was true spasticity. Thumb muscle was flexed. Not cramping just flexed and hard to move the other way until it finally "released" after a few minutes. That happened about 3-4 times. Every time was upon waking up.

Since then I thought I was over this. Met a wonderful woman, started a career in law enforcement, made it through the police academy. Until thanksgiving of last year when I herniated a disc in my back which caused an insane amount of pain and weakness and numbness in my calf. Of course because of the ALS fear, the weakness made me crazy but I kept a lid on it. I got surgery for that on 01/02/2024. Of course, I read several articles about how nerve injuries and surgeries can "trigger" ALS in people.

After my surgery my calf got better and returned to full strength and the numbness went away. I was happy that the surgery was successful.

Until last week. I have now noticed the weakness in that same thumb muscle from 6 years ago. It is not as pronounced as before but it is definitely clinical weakness, confirmed by the PA I saw on Friday for it. She thinks its just a muscle imbalance but she did recognize it. I asked for an EMG which I have scheduled on 04/17. I have been testing it constantly but I am terrified because it is not improving this time whatsoever and it has been 9 days already.

My family tries to comfort me and says it is all in my head. However, the weakness in clinical and coupled with what I've read about surgery as a risk factor and all of the other symptoms, it is hard for me to try and stay positive when, unfortunately, everything fits so well. The spasticty, the twitching, the now clinical weakness, it all fits too well.

Again thank you for all replies.

 

[lgelb]

So you overtested your thumb 6y ago and now you've done it again. Quite possibly the damage from last time was exacerbated by something this time, maybe rolling on it in sleep or holding a mug for too long/tightly. Color me not relating this to ALS at all.

If herniated disk surgery caused ALS, there would be a lot more ALS cases. Whatever you think you've read, stop reading and keep living. Sounds like you have a pretty good life these days and at worst from where I sit, you have a thumb issue that will require some therapy.

Nothing "fits" the way you seem to think it does, but we all have the ability to scare ourselves into scenarios that are worse than reality. If you'd never heard of ALS, which is vanishingly rare in 20-somethings, what would you be thinking about your thumb? Slow down and think just that.

 

[Nikki J]

The only credible research on nerve injuries was done on mice with a predisposing genetic defect. Even the mice without a mutation recovered You are , I think, neither a mouse nor a known fals carrier. Anyway mice studies haven’t translated well in ALS. If they did we would be cured.

Of course you aren’t getting better if you continue self testing

Let us know after the emg

 

[cd759]

Thank you for your reply! I guess what worries me is the fact that it is not getting much better. Maybe its because I am 6 years older but im not sure. That coupled with the twitching which has now flared up in that hand/forearm has me spiraling a bit.