Help! Severe Arm Twitch

Dear BFS Buddies,I think I have reached the end of my rope. I am about ready to go to the ER, but I know they can do nothing for me.I was awoken last night with my left tricep going into a full outright spasm. It will not stop. Please see attached video.I have never had a twitch this large.I have never had a twitch wake me up in the middle of the night. I have never had one fire this fast. My bicep twitch in the left arm from the summer was different. I have emailed both of the neuros at Forbes Norris ALS/MND clinic and I am waiting for their responses.I don't see how this is not motor neuron disease. I think that it is pretty obvious that this is outside the realm of BFS. I have never felt like more of the 'exception' than right now. I apologize to the newbies. Greg

Greg this is how some of my arm ones look like. It does look like typical BFS twitch - fast, stable in location! The only reason why it is so obvious is that there are large motor units in these muscles so when they fire, it is large thumpers. I swear I had the same ones during my journey. My triceps twitch is on the YT.

Docen, I will agree that this is not the typical MND style fascic that we discussed the other day, however how can a fascic this intense and just happen to be in my bad left arm at the same time? Too ironic. I have NO weakenss at all at this point, I think. But my shoulder joint is bad and sore and cracks all the *beep* time. I don't understand how the most intesnse twitchers on here, clearly I am one of them, can live like this isnt happening. This is acting just like my bicep twitch did with two exceptions. 1.) the firing rate is much faster 2.) the muscle group is bigger, and more of the muscle is active. It is going so strong is it odd to type with this left hand right now.

This is exactly like mine look. Faster firing rate is a good thing (not saying that slow is not, faster is just more common with BFS). There is nothing on your videos that would make me think this is not BFS. I would say that the nerve root is irritated for some reason - BFS reason we do not know about. It will pass. If you felt my abdominal twitches 2 months ago, I could not sleep, it was the strongest thing and I was terrified - it went away after 2 weeks or so.Again, the twitches there are large because of the large muscle bundles.

Thank you very much for your reassuring comments Docen.It should be noted that I worked out and lifted wieghts for the first time in a long time on Monday.Of course , my whole body was sore and is recovering still. However, my left arm was way more sore than the rest of my body. So sore that I was icing my elbow for two days due to the pain.I know this tricep is acting up because I worked out on Monday. I don't know why the twitch wont stop. I get that this is a hotspot, but one that wakes me up in the middle of the night??It wont stop firing. Please PM me the link to your video Docen. Thanks again for helping here.

I did PMed you the link.It is just a hotspot, mine triceps went for over 2 weeks! After work out, this is normal. Your nerves in that arm are probably more irritated, thus the pain and increased twitching. I would not worry, really.

I apprecaite the comments Docen. You video was a good one too. This bad boy wont stop either. This is ridiculous. I think the fact that it woke me up is still one I am going to have to wrestle with.

No problem. Remember, mine stop as well. I always try to remember that the previous one stopped eventually.

This is how my bicep, tricep, and quad muscle twitches look. They seem to come a little more infrequently, but really are the most annoying. I figured that this was typical BFS. Certainly doesn't seem like anything to be concerned about. I would be interested to see what your nueros say. If I e-mailed mine a twitching video, he would laugh and me and tell me to stop wasting his time.

Greg,That video looks like normal BFS to me. Here is a similar one of my own...-MattP.S. I'm shocked that this is the first twitch you've had like that!

G that is EXACTLY how my left bicep looks bro. No worries

Matt,Thank you, as you well know I have had similar style of twitching in both my left bicep, left quad and right shoulder.I have videos of those as well. You have seen them.But this twitch is different. It seems like the whole tricep is contracting and spasming, not just one fiber or a smaller group of fibers. Second, the rate at which this is firing is very fast, faster than my bicep ever fired off. That is weird to me.Thirdly, I suppose we can link it to my workout from three days ago, but with the other twitches sans bicep, they were do to fatigue and dehydration from being sick and being hungover. I haven't had an alcoholic drink in four days and have been eating well and sleeping well.It cannot be ignored and I cannot sleep as a result. It is not taking any 'mini-breaks' like stopping just for minute or two. It's been five hours now and I can only imagine if this goes 8 weeks like my bicep.Johnny, thanks for the constructive feedback. Can always count on you for that.Chad, thanks, this seems like a much bigger thumper than my bicep was. But yes, you have a good flavor for that one now.Greg

Greg,Same old bfs, just a little different package....don't worry about it. I have full blown muscle contractions all the time, in the form of cramps. As a former ball player, you know what that is like and I have them nearly everyday. I also have big, whole muscle "thumpers" that can go on for hours, even days. YOU ARE FINE MY MAN.....it is time that you face this whole bfs like it is just another full back running iso on you, knock it's d!ck in the dirt and get on with it. Take some of that linebacker mentality, I know you have, and keep pushing forward, never again giving in to this craziness. I finally had to get p!ssed off enough to say f this crap, if im dying I'm dying but in the mean time I'm getting back to living. You can/should do the same thing. MAKE THE DECISION TO TAKE BACK CONTROL OF YOUR LIFE, YOU CAN DO IT.Take care,Gary

Gary, your post struck a good cord with me. Thank you. At times like these I feel like Brian Bosworth trying to stop Bo Jackson on the goal line. No matter how juiced up I get, that f***er will always bull me over. I do get angry with this, really angry. I have holes in my drywall in a couple of locations to prove it. Anger to the point it kinda makes me an irritable a-hole to be around. My wife can attest to that. Even more sadly, my kids feed off of it. My youngest is having behavioral problems in kindergarten because I am too focused on myself dying instead of being a confident authoritative parent.I need to get back into the drivers seat, where I was. Because I seriously do not want to live this way I just don't. But its not so easy for me just to draw a line here.The only thing keeping me sane is this forum, the chat room and the friendships with others that I have made that are dealing with this. I even took a break from here and the chat room for a month as suggested by many and it did nothing to really slow down my sx or the associated worry.Therapy and meds are not working, so I don't know where to turn other than to suck it up, bite my lip and go on. Thank you for you comments, they were very motivational.

Greg,You have to sleep!! I'm SO sorry you are dealing with this. I had a similar twitch in my thigh muscle (not as educated as you guys are about the actual muscle names) two weeks or so ago. I had been running around all day, was stressed out because we were leaving for Mexico, and I was exhausted. Then my thigh started going crazy. I showed my husband and even he was surprised. It was such a huge twitch, it was taking control of my whole leg and just like you my first thought was "this can't be BFS". But, once I relaxed, it eventually went away, but it took a while.We are going to be victims of any weird neurological thing, because we have BFS. It's the reality we have to face. Just because it's benign, doesn't mean that it's not going to majorly impact your nerves and/or that it's in our heads. We have a neurological disease. One that won't kill us, but we are not normal neurologically. And like you, I'm okay with this, until something new or weird pops up. That's why we all have each other, because only our group understands, and can relate, and knows the level of anxiety it hands us.I'm so very concerned over what you're saying about your kids and your family. Somehow you have to figure out a way to relax and accept your condition. I know it's so much easier said than done, so I feel bad typing this, because I feel a bit hypocritical. The reality is that we all (on the board) know you're fine. And I'm sure, even without having met me, you would tell me I'm fine, because we recognize symptoms in each other. But it's hard to accept that you're fine, when your body is doing wacky things over which you have no mental control.Lastly, I really want you to consider (if you haven't already) seeing a really good chiropractor who does applied kinesiology. Mine seems to (at least temporarily) fix things in my body. I see him every two weeks - insurance pays for 70% of the cost - and he just fixes things with me, even to the point of helping me with such things sinus infections and laryngitis. I was having bad tongue and facial twitching last time I saw him, and he said it was because of a misalignment in my jaw (I have terrible TMJ), and then he did something with my jaw (that hurt a lot) and made it go away. I'm not saying it won't return, but literally the day I saw him, it had stopped by the end of the day. He also told me my body was out of balance and I needed more Vitamin D so I've increased my Vitamin D. With blood tests, and with his own applied kinesiology-type tests (muscle testing) - he has found my specific food allergies, my problems with cortisol, my lack of certain things like calcium, etc. I know it sounds hokey, but I think it might be worth a try (really for anyone reading this post)? If you're ever interested, I can get a referral from him for someone really good in your area. Luckily, the one I see is one of the best in the whole country... Just let me know if you want to go down that path. If I didn't have him, I think I'd be way worse off with my symptoms, than I am. I originally got the idea from Secret Agent Man, and I'm so very grateful I reached out to him and talked to him about all of this, because it's really helped me. I know alternative/holistic medicine isn't for everyone, but it really has been my saving grace.Anyway, I won't be offended in the least if you don't want to do something like this, or think it's too wacky to try, but I thought it was worth bringing up, because I so badly want to see you get better, or at least be able to accept your condition.Mitra

PS: If you look up Matt's video from Survivor - your arm reminds me of that to a degree. Just a strong violent, crazy twitch.

Greg this is going to sound absurd, but do it. Get the bath salts and sit in there before bed. I seriously couldn't function without those baths nightly for weeks. It does something to calm everything. And you will twitch *more* in the bath than out of it. So expect that. Do it right before bed, after you've done everything else you need to do for bedtime. You worked out in the gym and that is the cause of this. Keep that in mind. Its not a coincidence. Muscles do this when they get worn down by activity right now. I wish I could send you some of the dead sea salt stuff, its awesome. The Epsom's do only so much. If you have a whole foods nearby they might have dead sea salt. Get it. 2 or 3 cups. Soak for at least a half hour. Do it every night. You will feel the difference even in the morning when you wake up. I would never work out with this condition without the salt baths for the nights after the workout. Stupid as it sounds, give it a try.

I've had twitches this big as well in my shoulders too...I think the most important thing for us to remember about our condition is just how variable it can be. Twitching can be anywhere, from background 'buzzing' and vibrations, to full blow random thumpers that move a joint, to the spasms that your video is showing in just a few muscle groups (and even for some BFS people, a single 'problem' muscle group may be the only issue for a long time). The fact that there is no rhyme or reason to the randomness of the condition should reassure you that it is in fact benign. To reassure you that this is not *** :1) You have no clinical weakness. If you can flex, extend, abduct, adduct, internally/externally rotate your shoulder against minimal resistance, you are fine. 2) *** starts distally. Drop foot or inability to write with your pen. Symptoms are fast, hard, progressive, and not subtle. 3) Your neuro's have said no ***. 3) You are too young for ***. The yearly incidence is 1-2/100,000, with less than 10% of those being before 40, and the vast majority being over 60+ (still extremely rare!!!). That is 1/1,000,000 for <40. Further, most cases of *** before 40-45 are familial (family inheritance). There is also no link between BFS and ***....*** is an anterior horn disease (spinal cord) with the hypothesis being that glutamate cannot be properly excreted by transporters which then builds up and is toxic to the cells. BFS is thought to be a muscle channel problem, that is linked to stress, anxiety, exercise, viral infections, or idiopathic (unknown). There is no correlation between the two, so your risk of developing *** before 40 is the exact same as anyone else your age in the population (if no family history, probably on the order 1/5,000,000 to 1/10,000,000 per year). If your baseline is already 1/5,000,000 - do you even want to go there with how ridiculously small your chance of *** is by first starting with fasiculations before weakness and by having 'weakness' problems first in big muscle groups before small? The statistical chance is too remote (I would hazard to guess that this might happen to one person in North American each year, maybe).

i've had everything from massive thumpers to finer smaller twitches - the only times the thumpers worried me was when they first occurred in my head, this was about 12 years ago and i'd get a few thumpers in my head a day for a few months, i had no idea about bfs then and i know even now people rarely twitch in their head but by god was I scared about that back then, thought my blood vessels were exploding or something, funnily i haven't had a head twitch in quite a while, it's amazing how random this syndrome is - don't look for patterns or you'll be disappointed and try not to freak out when something out of the blue happens, that's the nature of the beast although we are all right there with you buddy as it's an incredibly hard thing to do to have something so tangible, visible and out of the ordinary and say "nah, that's nothing" but the vast vast vast likelihood is that it is indeed that magical word "benign" - but yes the challenge for all of us is to reconcile the extraordinary symptoms we have with the ordinary benign nature of what is afflicting us - it's tough but until we get there, then we're giving the condition more power and thought than it deserves

Greg, as you know I am your twin from the other side of the globe. So believe me: I had the same twich in my right triceps.It lasted nearly a whole day. But then it passed. And I had similar twiches in my right quadriceps.I know how scary this is. But me and you have survived our latest bulbar fears and in comparison with those the twiches are kindergarden......So bro, you have the same as I have. My docs said it's BFS. Yours also.Relax. Spent time with your girlfriend (she looks hot!). In a few days you will feel better. Then probably the next symptome is going to scare the *beep* out of you. But just think of what you've already gone through. And you're still here with us. At some point, and I'm sure this point is very near, it can only get better. So keep cool. Don't let this crap take your life. It is benigne.Greetings from good old Germany....