Benign Muscle Fasciculations, ALS, MS, Parkinsons

My journey trying to discover the cause and or cure for benign muscle fasciculations

[robertharris]

Thanks a million for this. These started for me after Covid. Nothing helped. I went through ALL of the tests. Several times. I also get the horrid myoclonic jerks and yes it’s worse when I’m tired. I have them full body. For 3 years now.

[ducheau]

The fasciculations cause anxiety because in the back of your mind you think it might be ALS

[mazyarkanani]

Just came across this now. If it makes to feel any better, I was diagnosed with benign fasciculations aged 21 in med school. Am 50 now, still healthy and strong. Still get them… I figured that if it was something bad it would have got me by now. 👍👌

[claudiasuarez]

This video has been so informational. Thank you for sharing your symptoms and how you deal with it. A lot of us have had the same fears and also have experienced the same symptoms you have shared. Thank you

[georgenicholson]

Man this is exactly what is happening to me it's crazy, i'm 100% related. the hypnic-jerks, fear of falling asleep I feel the same way and im pretty sure that a ton of people fell the same way, thanks so much for this video

[jasone]

This is my exact issue. I'm just starting off on trying to sort my issue out. Frankly, It's terrifying. My calves are just non stop fireworks, and I get just the occasional twitch else where. I'm just praying it's benign. This video gives me some hope that I'm just in the same boat as you. My father does have parkinson's which is the other factor in all of this. I just pray it's not ALS.

[druttle]

Thanks for posting, Jack. I’m 35, and have had these symptoms for 1.5 years now. They fluctuate, but the exercise intolerance and easy fatiguability is brutal. Was also a CrossFitter, and this has ended that for me. All investigations benign, just like everyone else. Came out of nowhere after a tremendously stressful year. If you’ve stumbled across any treatment options, please post to your feed. The leg zaps as I’m falling asleep are terrible! I’m desperate for a solution.

[brittanysacco]

Your video has just calmed me right down! I’m 34 F - there isn’t a place on my body that doesn’t twitch. I’ve seen a neuro x 2 and he preformed a NCT and EMG - in my two legs and arm. Both areas that twitched. They both came back clean - also had an MRI that came back clean - of course I go down the same rabbit hole as you!

[WECOOK]

I was diagnosed with Parkinson’s disease May 2021 at age 51, but started having symptoms in my mid-late 40’s. Yes i have these symptoms, it feels like I’m shaking all over, tremor in left hand, I have many more symptoms. I’m on medication CARB/LEVO and Primidone. I’m struggling to deal with this disease, it’s very painful and has started to effect my movement. God has a sense of humor.

[kwild]

I have the same thing for the past 4years.. ive been ran through the ringer with tests after tests.. and like you said all are within normal ranges.. i have the temors all over along with the feeling like I have bugs crawling inside me.. i just recently found out about this syndrome literally a week ago.. i have made videos of all my symptoms because I feel like I need some kind of proof to show that I'm not crazy when I talk to my doctors.. i have no doubt after watching other people's videos that this is what is going on.. its amazing to me that I am able to find this stuff and the doctors just look at you and say well I don't know....

[KimThomas-vpvm]

It took me a year to convince my GP to refer me to the Neurologist, it then took a year to see the Neurologist, he then referred me for EMG tests. I was then diagnosed with "non-benign cramp Fasciculations". I do get some muscle twitches sometimes in my leg and feet muscles. I also have osteoarthritis. My legs/feet can cramp up at anytime, with the condition. If you cross-reference with Isaacs Syndrome, Potassium controls what goes in and out of the muscles, that is has far as I've got with my research. With my condition the nerves are over firing the muscles but in the medical papers I've looked at, it says it is a rare condition and a lot more research has to be funded to find out the cause for the over firing. What I would recommend is that you read a book by Sally, K Norton, titled, "Toxic Superfoods" on oxalates. Food is certainly a starting point.

[florentinaosoeanu]

Hi!
To be honest, I've been crying the whole video cause it hit where it hurts the most. It can be so scary and your whole life can be turned upside down because of those insecurities. (Especially when I've went to the same investigations as you described - they can be so so so stressful). It's been quite a while now since I'm experiencing this and I'm trying my hardest to accept this 'new normal'. Anxiety can be such a pain in the ass.
Thank you for sharing this, for me it was beyond helpful and I'm sure others feel the same. I hope you're fine!

[robbiedubes]

This video is great. Same symptoms. Have had fasciculations in my calves for 2 years. Gonna book an appointment with my primary care for peace of mind. I'm terrified its ALS...

[BamBam-mesf]

I only drank 2 cups of coffee a day and no other caffeine intake. That alone made my whole face twitch all day long, my back and my right calf. Lasted mabye a year. A week stopping coffee fixed it all.

[farmishcitygirl]

I realize this is 2 years old but I am literally going through this right now. It started after a medical accident. I am seeing a neurologist and we are ruling out ALS and MS but the tests and waiting for appointments take so so long. The unknown is scary and the muscle fatigue is so frustrating. I can't do what I use to do and I freaking hate it. Glad to see I'm not alone.

[shannonjackson]

I was also diagnosed with BFS back in 2018. I was worried out of my mind that I had ALS or some other fatal neurological disorder. My twitching has improved considerably the last five years, though I do have occasional, short-lived flare-ups. I think the worry the symptoms cause are often much worse than the symptoms themselves.

[catmando]

Thank you for this video! And thank you for being very thorough in your addressing BFS. Covering all the bases helps a lot.

[fredjiuuk]

Thank you Jack for sharing your experience! Best Regards from Brazil

[HBeretta]

I've been going through this nightmare for the past 5 yrs. Everything you explain here exactly. Likewise with the exercise intolerance to the point of feeling weak and shaky. My weight has remained the same...I can jump and touch an 8' ceiling still, can still do a pushup. But there are days where I feel rubbery, anxious and weak. I used to fixate on every symptom...if my arm felt numb i would perceive it as worse. Of course I catastrophize as well in thinking the worst such as ALS. i cut out caffeine just this yr to see if it helped and it did some with the anxiety of the situation. Also, I would get the myclonic jerks out of a dead sleep as well. Also, on rare occasions I would wake up gasping for air as if I were suffocating; long list of symptoms. Just to clarify I've had body-wide twitching for the past 5 yrs. My PCP doesn't want to send me to neuro because reflexes are still normal and I don't present with substantial symptoms like loss of function or atrophy. To be honest, I've given this much thought and others might quickly seek out other opinions, but if I did have a worst--case scenario condition I'm not sure I'd want to know if the possibility of normal function existed for a few more years. I'd rather cling to hope and not know until it's blatantly obviously I can't walk, speak or whatever. It's a mental grind for sure...very difficult mental grind. I'm about to turn 45...this all started at just before turning 40. Also, there are days where I feel so anxious and have absolutely no energy at all, yet can't seem to relax or even fall asleep.

[seanlindemann]

Everything you said we are all going through exactly.