My Widespread Twitching: Update

I've had a couple PM's about this so I thought I'd just give a description of how widespread my twitching has become... keeping in mind that I just got the all clear from Mayo. So hopefully, this will help to ease the mind of those who notice a new twitch somewhere or who are worried about an increase in symptoms.My calves and feet go nonstop and have been that way for over 9 months, although in the past few months they have ramped up in intensity. Flexing the calf does not stop the twitching. I can show them to someone without fail everytime I lift up my pantleg. Other than that, I can very easily trigger twitches in most other parts of my body. I can close my eyes tightly and they will twitch. If I yawn, I will get twitches in my eyes, back, shoulders, maybe even my lips and chin. If I press my tongue to the back of my upper teeth, it will thump and twitch. If I stand with my knees locked, the area just above my knees (lower thighs) will twitch as I'm standing.As I try to go to sleep, I always feel different parts of my body going off... shoulders, upper back, lower back, calves, thumb, forearms. But as I fall into the first phase of sleep, I will get stronger jerks. Like my arm will pop up, my thumb will move. Sometimes I get weird ones in the back of my head or my whole abdomen will jump up.When I first wake up in the morning, I do that stretch where I put my arms up over my head and point my toes. When I do that, forget it... it starts a symphony of twitching all over my body. My shoulders will flutter, lower back, forearms, thenar muscles, eyes, feet... all of those muscles will twitch at the same time and then slowly revert back to just the random pops and flutters throughout the day. Anyway, I just wanted to write a detailed description so that others can see how widespread the twitching can be, again, keeping in mind that I was just thoroughly checked by the Mayo clinic so the frequency of twitches does NOT indicate something more sinister. Please feel free to write your own descriptions on this post because it helps people as they search and worry about their own twitching. -Matt

Matt, Wow! I'm never going to gripe about my twitches again! Mine are miniscule compared to yours! While I don't have continuous twitching, one continuous symptom I have is tingling. In my groin and various places in my leg and foot. Sometimes it keeps me awake at night, as if I'm more sensitive to it on certain nights. I also consistently have those burning, stabbing sensations which cause a major jerk in whatever muscle it decides to happen in. (Mostly my arms and legs.) I do twitch nearly every single day now for nearly 7 months, most often in my feet and calves. I would describe then mostly as strong, "strumming" type twitches, like my foot muscles are guitar strings. Frances

That puts it in a lot of perspective, BobJazzy, thanks. My twitches are amateur by comparison. For me, I just have a day where a muscle group will decide it is going to have the limelight, and then it will twitch for a few hours. Two days ago it was both of my shoulders. like rapid hiccups in my shoulders for a while. Today it's my right foot and outside of my caLf, and it's the more rapid firing wave kind. lt will fade out in an hour, most likely.

Thanks for the replies guys, I think it really helps for people to read about each others symptoms in more detail.I certainly don't claim to twitch the most on this board, I know there are many people who twitch as much or more than I do. But I wanted people to know that a new spot here and there or an increase in frequency is normal for BFS. It doesn't indicate anything more.-MattP.S. If others read this post, please feel free to describe YOUR twitches (frequency, location, etc). It will be good to see the range of symptoms on here.

I have been debating for a couple days on whether to respond to this topic or not. The reason is that I am not sure if my response of my description of my fasciculations will be helpful and reassuring to others or cause them to kneel down and pray for me. Either way is fine by me I suppose. Also, I still feel that the way my twitching is behaving is not like others and so I also will be anxiously awaiting to see if anyone else can relate, and I don't think that will happen, but like most things in my life, I will give it one shot. So I have been twitching body-wide since August 14th, 2011. My first noticeable twitch was in my right triceps muscle of my upper arm. Not my calf or eyelid like most everyone else. After the consult with Dr. Google the twitching started to spread to different areas, most noticeable the calves. They would be more of random popping in both calves, mostly right sometimes left, with and occasional 'multi-fire' fascics catching hold for a couple seconds then stopping. I would also get the occasional random single fiber (same spot), 'multi-fire' fascic in my upper body. Abs, shoulders both front and back, biceps, triceps, forearms, thenar muscle, butt, quads, taint, eyelid, face, scalp, neck. With these type of multi-fire twitches, the muscle will twitch for several times. When I try to go and look at it, it usually stops and doesn't return. I would only notice my twitching when at rest or sitting, not much at all when active or standing. This was how it was for about the first 3-4 months.Today the twitching has increased and intensified. The moment I open my eyes in the morning I am greeted by my two favorite friends, the multiple firing twitch in my right rear shoulder along with the multi-fire twitch in my lower left quad. These are in the same spot, just fluttering/firing away. If I am lucky that morning, they will do it at the same time. Throughout my day, when I sit down and try to relax and meditate or breathe, the twitching is very noticeable. Mostly random popping all over and the same time often. Calves are going quite regularly. I do get the occasional single fiber (same spot), multiple flutter/firing fascic throughout the day randomly, but usually it is in my shoulders or biceps or abs. I get twitches in my quads when I am standing, lower quads. I get twitching in my shoulders when I am standing and active, they may last in the same spot for a few seconds and then be gone. As the day progresses, my twitching gets worse. By bed time I am popping all over. I crave a drink at night to relax instead of reaching for an Ativan or muscle relaxer, but I have . Alcohol used to stop/alleviate the twitching. It along with any other foreign substances actually do nothing to stop/lessen the twitching, just take the mind off of it. My twitching is progressing, without question. I have sensory things occurring as well. Numbness, itching ,etc. No loss of strength. I test quite often. The last few beacons of hope I have left are that 1.) I am not cramping per say 2.) When I flex the muscle the twitch will stop instantly 3.) I don't have any tongue twitching. Not that ANY of those are terrible things, I am just not trying to fit the full spectrum here, not trying to be the BFS King. I am fully prepared for all of those things to start here any day. I don't need to go into detail for those that know my story. BFS dx'd twice, once by a neuromuscular specialist, once by an ALS specialist. Fascics seen and felt by neuro at two months. Clean clinical. (intermittent Hoffmans reflex was disregarded). EMG clean at one month. Not even a fascic picked up. If they could not pick up a fascic today, it would mean that machine was broken. The neuro wants a repeat EMG at one year. I am on the fence on that one currently. Sorry for the novel. I am sure after reading this, you should all rest easy.

Greg, thanks for the detail! I think its really helpful for people to read.Regarding you twitching, if I told you right now that we had a new person on the board with the following symptoms, how would you respond?* First noticed twitching in one spot. Then it went widespread after googling.* Twitching all over their body for 6+ months with no weakness.* Clean EMG, clean clinical. Was seen by 2 neuros including an ALS specialist.This is rhetorical. I know how you would respond . I know it sucks, and it can drive you nuts. But you are a classic case of BFS. You just happen to be at your peak. Endure the storm buddy, there's some sun around the corner! -Matt

GMayes20: I seem to be like you at the first 3 months... DIdn't progress so much yet. My story short (yes I can be short!)Twitching started October 2nd in my left index finger, stayed a day, same time triceps started lasted one day also, googled and found ALS, I started twitching all over, 90% of it was on theleft side except my right eyelid is twitching constantly or at least when I yawn or close eyes hard since day 1.I had every day different hotspot, since 18 days later I noticed poping in foot arches that is there for 4.5 months now. I can see it every second or if I am unlucky I can see it at least in a minute on both feet, sometimes can not be felt. It is a big twitch in the hallicus brevis muscle. Others come and go, lately I have twitching in the right also much and I have started to get calves twitching for a day long at a time (never had calves before).They usually wake me in the morning in my arms when I stand up they are gone.What saves my sanity:1. No tongue yet.2. No real weakness, just a lot of foot and hand pain.3. When I stretch my muscle most of the time twitching stops.4. I have lot of sensory stff like numbness, night tremor etc...

I know but it is neverthless nice I don't have it yet and that I can count on to, even if it is false "holding on to this"

I first noticed twitches in the mid 90's - I was intrigued by them, not worried at all, I only got occassional twitches, single fire ones or ones that went 5 or 6 times and then stopped, had them intermittently back then, i'd only notice on every few hours, they happened almopst everywhere......after a while they seemed to happen less and less and i'd only get the occassional twitch every few days for a long period - about 5 months ago I was worried about slurred speech so I googled slurred speech and found a connection between slurred speech and twitches (I learned the word fasciculations) and then i went on an absolute freakout - I was so utterly scared of having bulbar, I'd talk to myself constantly walking down the street, people thought I was nuts, i'd get home and read newspapers and books out loud, I asked my girlfriend every day numerous times if my speech was ok or if i sounded weird, for about 5 or 6 weeks I was hyperaware of every sentence that came out of my mouth - then I realised it wasn't getting worse and I wasn't really slurring, but now I had all this ALS knowledge and my twitches were back with a bang - I was getting far more frequent twitches and in new places and that has continued to this day, latest concern is a persistent thenar twitchI got a clean EMG and the "see you in 6 months, i don't detect anything sinister" from a neuro about a month ago, also ahd clean MRIs and bloodscurious how so many of us have said our twitches spread like wildfire and increased in intensity and frequency after visiting our good friend Google and experiencing extreme ALS fears - surely this can't be a coincidence, surely the psychological affects of those fears are doing something to us that is not yet understood by rational scienceI mean, there were days when I woke up during the worst period of my bulbar fears where I was almost accepting death. where I thought I'd prefer to just stay in bed rather than face the day of all-consuming fears ahead....I'm still a bit scared but nowhere near as bad as I was but I'm not over it yet and i never had a history of depression before nor was there some traumatic event or virus that kicked this off - rather a simple hour or two of googling tranformed me into a total mess

Twitching started in right quad; consulted Dr. Google....twitches started in shins, feet,butt, arms. This started in July 2010 Many months later twitches were most likely there, but did not "bother" me. Fast forward to November 2011. While eating chicken. It got stuck in my throat and I panicked. I freaked out, spit it out and anxiety took over. Subsequently, I was afraid to eat, not wanting to do so because not being able to swallow it meant I was in trouble with +@* Jan 13/12, my right shoulder blade started to twitch. Rapid fire, non-stop at times. This NEVER twitched in the past. It continues today, but has decreased in intensity. At the same time I started pating attention to my tongue quivering like crazy2-3 weeks later I started to eat. Eatin is NO problem. I swallow with ease. We'll, last week I noticed my jaw was snappiing shut and I was biting my tongue. This happened a few times last week and today, I have bitten my tongue over and over and over. It is so quick that I don't know if my tongue is thrusting onto my teeth or if its my jaw; I think its the llatter. I have been on Google all night and I am terrified. My eyes also flutter back and forth when I m focusing on something, apparently (of course) a sign of @+#. As an aside, I had been using Lorazepam for the past 2 years off and on (1-2 mg/day), took last one on Sunday (doc won't give me any ore..smart man I guess). Anyway, my one positive message for those whose tongue twitches/quivers/jumps/moves. I am a dental hygienist and over the past few months since my own tongue started twitching, I have been examining my patients' tongues closely. Let me assure you, the majority of their tongues twitch, some quiver and move like you wouldn't believe. The odd person's tongue is quiet, but that is the exception. Equal amongst female/male. Hope that gives you some peace and relief. Take care all.

I get that twitching in the back of my right shoulder very frequently. its my new pal. Just yesterday i was getting hypnotized and lying on a couch (just for stress reduction), and it took forever because m shoulder kept twitching and making me laugh. Imagine this scene..."Imagine you are in that special place"twitch"and you are relaxing."twitch twitch"the sky is blue and calm"twitch twitch TWITCHGhayes, I think you are trying to be humble, but its ok to be twitch elite. we respect thatt But honestly, what you described sounded very familiar. I just saw a neuro Nurse practicioner becausee of my continued hand pain and balance issues. balance was from low blood pressure. she said my twitching and arm hand pain seemed completely benign and said it was likely my spasming twitchy shoulders being too tight. So even on continous feedback with docs, it it still ok, and that was with an arm that felt stiff and weak, too.

I would say I am a cross between Matt and Greg except I also have painful cramping in my hands and feet. Not happy about that as that is a symptom that I am not sure is terribly common amongst BFSers. I have the major jerks at night (those are soooo weird) and wake up several times a night with body parts completely numb. Even my face. Not thrilled about that either. I am a new twitcher with only about 12 weeks under my belt. My widespread twitching happened before I started googling. My first twitch was more like a tremor of my right thumb. A couple of days later the twitching set in. Primarily is in my calves and feet but goes into all the various areas of the body at different times of the day. My twitching is not non-stop but fairly active every day. I think the fact that all these symptoms came on so suddenly (twitching, cramping, jerking) is enough to drive even the sanest person to levels of crazy that he/she might have thought were impossible.While I will not say I am 100% comfortable with where I am mentally with all this, 12 weeks is still not a long time remember, I am trying to be. I went to a neuro and had a partial EMG (one side only) at the 8 week mark. Now I worry was that too soon into "the process"... that is, if I went a bit later than even today, would I get the same results. I think so. But thinking does not equal knowing and I believe therein lies the "problem" for me and maybe for others. Take care, Vicki

Vicki, My feet and calves cramp sometimes. A lot lately, but it comes and goes. I also jerk at night as well. Actually, that's why I'm awake at 3am. As soon as I rolled over and tried to drift off back to sleep, my body jerked. My twitching is a combination of fluttering and pops. Mostly their in my thighs and calves, but I do get them in my arms, butt, abdomen, toes, feet, back, prerry much anywhere. They are not constant, but I have them throughout the day. They are so much better when I'm not stressing. I did have my 1st Hot Spot the other day when my thigh twitched for an hour and a half non-stop. I guess that's a hot spot? My left foot vibrated for a week about a month ago. Nightime is when I have the jerks and i notice my fingers twitching. I suppose it's because I'm sitting still. It's kinda funny with my fingers because I can "hear" them twitching under my pillow and it wakes me up! I hear this scratching sound, LOL! I have joked and said if I could just be moving around at all times, I'd feel great!!. This all started for me with my index finger twitching. Or, so I thought. When I thought back on it, I remembered my left eye was twitching for a couple weeks before my finger, but I thought nothing of it. It stopped and then my finger started. I'm 6 months into this.

Mine are much like Matt's…My left upper eyelid flutters when I look a certain way. The lower lid pulls back and forth when I turn my head to the left—weird,I know. If I sneeze, forget it. My eyelids go crazy, along with the muscles of the brows. I find myself fighting the urge to sneeze.Tensing of my eyelids will also cause twitching, as does drying them off after showering. I've grown so tired of the eyelid twitching that I get Botox about every three to four months. This week is a follow up. My calves and insteps go all the time—24/7, without fail. Have for over 7-years now. They don't bother me in the least. My thighs twitch pretty regularly. As I sit, I can feel random thumpers come and go. If my hands are on my thighs, I will feel them. At this moment, my left hip is going a machine gun like twitch every minute or so. Yesterday, the muscles above both knees were going off. Everyday, it seems every muscle in my body with twitch at some point. Arms, eyelids, cheek, back, calves, feet, abs, chest, behind my knees, hip, etc. Just another day in paradise. And there goes the machine gun in my hip again. Ugh. And the eyelid. Best, my friends-Sean