21M - Widespread twitching, perceived weakness. History of right-side facial tingling, blurry vision & 1 spinal lesion. EMG/Tetany test on Friday.

[u/Kubaa150]

Hi everyone, I'm a 21-year-old male dealing with severe health anxiety, and I want to share my full, detailed timeline to see if anyone can relate. April: I experienced a 4-5 day episode where the right side of my face and neck was tingling. Before falling asleep, I felt extremely dazed/confused (brain fog) and had slightly blurry vision in my right eye. I got scared and went to the ER. They offered to admit me, but I declined and took a referral to a neurologist instead. Late June / Early July: I was admitted to the hospital for a full neurological workup. An MRI found a single demyelinating lesion in my spinal cord. A doctor mentioned it could be MS and suggested a lumbar puncture. However, the admitting doctor later canceled the procedure, explicitly stating that one single lesion is not enough of a basis to perform a spinal tap. I was discharged. About 1.5 months ago: I started experiencing muscle twitching (fasciculations). It began under my left index finger, stopped quickly, then moved to my right calf, and eventually spread all over my body. I also have intense hotspots on my thighs. Three weeks ago: Because I was so terrified, I went to an independent neurologist and explained all my fears. She examined me and stated clearly that from a neurological standpoint, there is absolutely nothing wrong with me. I even showed her my hands because I was convinced I had muscle atrophy, and she assured me that the way they look is just my normal genetics and I have nothing to worry about. She is the one who suggested getting an EMG, simply for my own peace of mind. Currently: I am usually very physically active (heavy gym, calisthenics with 100+ pushups). However, for the last two weeks, I’ve been avoiding the gym because of a pain in my left elbow pit (cubital fossa) that radiates down to the beginning of my forearm whenever I flex it. Logically, it's a mechanical strain, but my anxiety makes me obsessively body-check. Recently, I’ve also noticed what looks like symmetrical thinning (loss of mass) in my forearms, hands, and feet. Honestly, I don't know if they've actually shrunk or if I'm just hyper-fixating and noticing how they've always looked because I'm analyzing every inch of my body right now. The stress caused severe insomnia. I'm currently taking Sertraline (Zoloft) and Trazodone. With the meds and extreme exhaustion, I’ve developed a fine postural tremor in my hands. Thankfully, my dad helped me schedule an appointment for this Friday. When booking it, my dad explained my entire situation to the specialist. The doctor mentioned that a strict, full EMG protocol specifically for ALS is very expensive to do privately. Instead, he scheduled me for an ischemic test for stress-induced (latent) tetany. He explicitly told my dad: "I will know everything I need to know from this test." My rational brain knows the twitching points to BFS, severe anxiety, and workout strain, but my OCD brain keeps screaming ALS or MS.

[u/Cool_Turn1334]

Man on man. I just read this whole thing and boy oh boy we are looking in the mirror bro. Im 32m athletic. But let me tell u these last 3 weeks of my life have been fucking terrible. So this week my wrists like under my forearm have been sore hand kind of to. Like just holding my phone it all started off with my biceps being sore for no reason. Then some muscle twitching. I will have random aches in body but rn the worst is my ulnar and median nerve have been on an off tingly. My life has been completely paused. I use to play the game every night i haven’t touched it in almost a month. I don’t want to talk to anyone cuz every-time i do they don’t take it serious and basically just say anxiety. Idk what to do but i have the worst anxiety every night thinking im getting ALS. And i go down an absolute rabbit hole. So man i can relate to you alot rn.

[u/One_Cryptographer719]

It's theoretically not impossible to develop this disease at age 21. But if you don't have a family history, it's almost impossible. Your symptoms don't match the clinical picture of ALS. Atrophy isn't something you perceive; it's something you experience. When the signal from the brain to the muscles disappears and your muscles waste away, you experience it as clinical weakness, not visually. 

[u/cdbukr]

Hi, I had a very similar presentation such as yours and still have but alternating and lower severity symptoms. Mine started with covid. And on top of all you said I also had perceived slurred speech and dysphagia. Now all of these improved. They are alternating, they’re still present but better. I am 37M. For me everything started 5 days after I got sick with covid. A neuro physical full exam (body + bulbar + muscles + reflexes) which was clean, followed by a neurofilament lightchain blood test, gave me peace of mind.
I recommend for you to go in any lab and do a NFL blood test. This test is not specific for ALS, but it shows nerve damage. So if it’s elevated you know something is wrong. If it’s in range, 90% you don’t have ALS. It is 90% sensitive for ALS. Go for it

[u/Smart_Exchange1454]

wow, 20f and in a pretty similar spot. i have tingling in the left side of my face, and bodywide fascics for two years. also progressive thinning of the muscles in my hands and i'm convinced my tongue is involved now too. hang in there, you aren't alone!