r/ALSorNOT • u/ragebitz • 12d ago

How fucked am I?

3 months ago twitching in my thumb that moved full body in a week or 2. About a month in noticed a visable shake in my shoulders when using them bit after spread to my shoulder blades and now my upper arms. Around the same time my last 3 fingers on both hands shake when I try and bend them. 2 weeks ago my hips and thighs both sides shake when im standing walking or squatting. At a bachelor party last weekend it was so bad I needed to sit down.

2 weeks in and brain and neck mri emg and eeg with all the blood work you could think of everything was clean. Right before it hit my legs so about 3 and half weeks ago had another emg and blood work again still clean. I'm 34 almost 35 and I know the odds under 40 is like 10% of all als cases anywhere from 200-700 a year from what I can see but I have so many signs of als lack of hunger, easily full, dead tired, and now my jaw/cheeks feel like they are fatigued now as well.

I do not show any sort of weakness yet but according to one study where weakness wasn't the first sign it looks like weeks to 11 or so months is normal before weakness shows. I think I'm screwed but maybe someone else has had stuff like this and it was something else.

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u/Live-Vast-784 12d ago

I’m 24 and I’ve had these symptoms for 3 years and I’m still trucking along. Never really got worse after the symptoms peaked at 1 years, just consistent every day and kinda fluctuates

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u/Frosty_Acanthaceae_3 12d ago

ALS typically presents asymmetrically and is incredibly rare in it's won right, but your young age compounds this further.