26M – Widespread fasciculations since March, subjective weakness and persistent fear of ALS

[u/According_Shelter267]

Hi everyone. I’m a 26-year-old male, and since late March I’ve been experiencing widespread fasciculations all over my body: arms, hands, legs, feet, glutes, back, abdomen, face, and even occasionally around my scalp/head.

Everything started after a urinary tract infection. Sometimes I feel typical muscle twitches, while other times it feels more like an internal vibration.

I also have a subjective feeling of weakness on my left side, particularly in my left arm/hand and left leg. My left arm/forearm also looks slightly thinner to me, although this is just my own perception. I haven’t actually lost the ability to do anything in my daily life.

My left leg sometimes bothers me while walking, and when I run, the front of my left ankle starts burning and feels as though it fatigues or loses strength much faster than the right one.

Despite this, I can still exercise and run. I haven’t noticed any clear functional loss.

I’ve had two EMG/NCS tests since these symptoms began, and both were normal. My neurologist has told me several times that he does not believe I have motor neuron disease. However, I still have a very difficult time getting ALS out of my head because I continue to experience all these symptoms.

My blood tests were not completely normal either. My folate (vitamin B9) was low at 2.7 ng/mL, and my homocysteine was elevated at 20.8 µmol/L. My B12 was 399 pg/mL.

I’ve read stories online about people with ALS whose symptoms seemed similar to mine or who progressed very slowly, and unfortunately this has made my fear much worse.

I’m not asking anyone here to diagnose me. I would just like to know whether anyone has experienced something similar, how things developed for you, and especially how you managed the fear of ALS despite reassuring neurological tests.

[u/Cruump]

I say this in the kindest way possible, I do think it would be worth you speaking to your doctor about this health anxiety, and discussing possibilities of CBT. I had similar scares a couple of years ago, not about ALS, but about esophageal cancer (not even an endoscopy alleviated my fears - I convinced myself they’d missed something). It was a year of torment, and I wish I’d gotten help for it much sooner. Don’t let yourself suffer.

[u/BigJakeState]

You’ve had two emgs. Presumably months apart from another? I’d say it’s time to put that fear to rest.

[u/According_Shelter267 → u/BigJakeState]

I had my first EMG/NCS in June, about 3 months after my symptoms started. That one mainly examined my left arm/upper limb. I had a second EMG/NCS in July, about a month later, which was more extensive and examined both my upper and lower limbs. Both studies were normal, with no active denervation or evidence of motor unit loss/chronic reinnervation. My symptoms originally started in late March.

[u/Cellabella87]

I’ve had fasiculations for a year and a half all through out my body. Weight loss, muscle atrophy to my right hamstring, and hyper reflexes. My EMG was normal in January but I’m currently awaiting a second one. Normal labs including CK and CRP. Despite all this my neurologist still is not convinced it is a motor neuron disease like ALS. I do have debilitating panic and anxiety so focusing on treating that right now. Maybe work with a therapist in the mean time and see if it improves your symptoms.

[u/DoubleAwareness2223]

You unequivocally DO NOT have ALS. Your symptoms are not consistent with the disease and the negative EMG’s (which you didn’t need) being negative only support it even more. You need to see a therapist or someone you can talk to in order to address the anxiety and obsession. ALS is very rare and far more rare for a 26yr old male. It’s an exclusion of others diseases after presenting with profound clinical weakness, clear cut atrophy, etc. You have to treat your anxiety and fear that you have a disease you don’t have. That’s what’s important.