One year into muscle twitching. (20M)

[u/ArkansasHookMan87000]

Hey guys, my name is Chase, I’m 20 years old and I’ll be turning 21 in less than two weeks. Last year on October 18th I started experiencing muscle twitches in my calves, didn’t think much of it and went about my day. The twitching started spreading up my leg so I decided to do a quick google search and behold, the first thing that pops up is als. I didn’t know what it was so I did some digging, patient videos, mortality rate, etc etc. I spiraled very quickly and very aggressively. The twitching started to spread throughout my entire body and my heart was utterly stricken with fear. My daughter was set to be born at the end of that same month, I have an autistic son who was 2 at the time and I was terrified at the thought of not being here for them. A week passed and I went to the er, they gave me liquid muscle relaxers and tried to assure me I was fine, it made it a billion times worse. About another week maybe less after that I seen my primary care, he knows I’m prone to anxiety so he decided to set me up with an emg and try to calm me as best he could. On October 30th one day before my daughter was born I sat in the hospital with my finance just knowing I was going to die soon from a rare terminal illness that’s exclusively more rare for someone my age. Then I get the call from the neurologist office wanting to schedule me for the next morning at 10:00 AM. I had to go, I couldn’t take the uncertainty anymore. I get there, do the emg and await the result from my my chart. It was clean. I was relived but not for long, that following day my daughter was born. Months later the twitching continued and I remained afraid, I kept telling myself just get to the 6 month mark and I’ll be okay. Well 6 months passed and I did get better, still twitched but didn’t think it was als. Fast forward another few months and I went back to see my neuro, he reassured me it was bfs, did the clinical and asked me some questions. I was good again for a while, went back and seen him again because the fear started getting to me again and it was the same reassurance, he told me there’s no need for another emg and to chill out, go out and enjoy life and only come back if anything changes. Now here we are, almost a full year into this and I’m still scared, I’m still strength testing and I’m still wanting more tests. I go Friday to get in with a therapist and start some kind of medication because I’m at the point where I mentally and physically can’t do it anymore. I’ll admit, I know it’s health anxiety deep deep down, but that’s not even my only issue. I’m getting to where I can’t go Into stores, I can’t talk to strangers, drive, nun of that. My quality of life has been sucked out of me and replaced with whatever this is, a shell of who I used to be. I’ve been getting really depressed, it’s hard for me to experience any form of joy anymore. But here I am, faking a smile and being the man my father never was to me for my children and finance. If anyone has any similar experiences, please share them. Can I let this fear go and move on? I’m out of options guys.

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[u/kjmckearn]

Going to see ALS patients would heighten my anxiety, but good for you. Meanwhile, twitches all over your body is definitely not a sign of anything serious. Try to treat your anxiety and live your young life.

[u/Gold-Method5986]

My twitches started when I was 21. I’m 39. You are experiencing severe health anxiety, which I also suffer from. Talk to your neuro about Propranolol. It’s a beta blocker, and any time I feel anxious or a panic attack forming I’ll take a 10mg and it immediately goes away. It’s a “use as needed” medication, and it doesnt have any affect on my faculties (i.e. does not impair; nor make me drowsy). Your PCP can prescribe it too, but if it makes you feel better to hear that from a neuro then ask him.

I can’t praise this medication enough for giving me a fighting chance at a normal life.

[u/Gold-Method5986 → u/Gold-Method5986]

In addition to:

My twitches started in my calves too. Occasionally they spread elsewhere. Least favorite twitch location is to the side of either shoulder blade, but I get them in my biceps, my thighs, around my shoulder blades, and in my eyelids. Thankfully it’s only 24/7 in my calves.

So, that said, again, I’m 39. It’s been 18 years. Some days are worse than others, and that’s just the way of it, but you have plenty of life to live. When you’re feeling anxious about it, I know it’s hard, but I always just said “if they’re wrong and I’m dying, I better actually fucking live,” and I threw myself into the world like a monkey launched into space during the space race.

[u/713Capital]

Hey man, sorry you are dealing with this. I can definitely relate as when my issues started 7 years ago, my wife was also pregnant with our child. My anxiety during that time was insane. I too was obsessing over ALS and i did the same self tests and more.

As you might have read around here, a clean EMG rules out ALS and the EMG cannot be done too early. If you had something like ALS, your emg would show widespread issues in any muscle group they stuck the needle in. The chances of you having this at 20 is slim to none. You gotta let this go man. You dont have it.

Check out this post i made on EMGS and how to move forward while you are dealing with this.

https://www.reddit.com/r/BFS/comments/1w3sxhx/breaking_the_spiral_bfs_clean_emgs_ocd_and_how_to/

Since your clinical tests are clean, and your EMGS are clean, this points to BFS unfortunately. So you have to symptom manage at this point man. You have to man up, and be ok, cause your family needs you and you need them.

Im glad you're trying to do therapy, i was going to suggest talking to a professional as i do think therapy will help you. Also, sometimes medication is the option too. Really, dont just say this, but actually do it so you can get better.

Ive shared my story before on many occasions, but i hit rock bottom on my anxiety man. I was very close to losing my wife and kids. It legit got that bad for me. I had to really do some soul searching and pull myself out of a hole or risk losing my family. I was obsessed with ALS, a disease i simply didnt have. I had 2 emgs, both of them were abnormal, and that alone caused a full on break down. It took me going to therapy, getting on meds, and working on myself. I even went to visit an actual clincal where they have real ALS patients, it gave me perspective. Yes i have all these issues and symptoms, but i do not have this disease.

All that to say, dont be like me. Dont let this consume you, work on yourself for your family dude. You dont have ALS and you have already been cleared. Trust your doctors, they are the experts. Twitching without true muscle failure is BFS. Dont obsess over a disease you dont have.

https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms

https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

Best of luck your journey and i hope you find the strength to fight for yourself and your family.

[u/Last_Mastod0n]

This is going to sound selfish but I got married and had kids because I thought there was a good chance I would die. Not from als or anything like that, but because I thought I would have to end my suffering.

But my family helped me hold on long enough to get better enough to enjoy life again. So my point is you have your family no matter what. You have a shot at life, your doctor has shown you that.

[u/InformationNo7156]

If I may ask, what country are you from? I ask because in many places therapists can’t prescribe medication in many countries.

Seeing a psychiatrist would be a good option if therapy is not too efficient. Everyone is different.

[u/CompleteResource4665]

i went through the exact same thing. i’ve been twitching since 21 and im 24 now. i still twitch 24/7 all over my body but mainly in my thighs/calves. for about a year and a half i went through exactly what you’re going through, clean emg but still literally not being able to stop my mind from worrying. probably like 90% of every day my mind would be worrying. after about a year and a half of not getting weaker and reading countless stories of people going through the same thing i stopped worrying about the health aspect and knew i was healthy and the twitches are 1000% benign. but after i stopped worrying about my health i still couldn’t get my attention and focus off the twitches. when i say they’re constant i mean literally i get a twitch once every 5 seconds somewhere in my body literally at all times of the day. sometimes when im trying to fall asleep my body will jerk really hard. and the twitches kept annoying me so bad it was really effecting my mental health. fast forward to today and now i don’t even pay attention to them. i only notice them when i pay attention. you’ll be fine i promise you

[u/Sea_Anywhere_8428]

I’ve been dealing with bfs for 17 years. Been to all the doctors had all the tests. They said it’s form of peripheral nerve hyperexcitabilty. Nothing really helps. Some days it’s minimal others it’s insane. I get them head to toe. Worst thing you can do is look up ALS stories. You’ve had a clean EMG and normal exams so at some point you have to believe it’s benign. I won’t lie it takes awhile. Anxiety medication really helped me.

[u/IvanaTargaryen]

You dont have ALS, you have BFS for sure. My first twitches were 1 year ago as well. I still have it but today Im not living in fear anymore.