24/7 Twitching For 8 Weeks!

This forum is the best thing that happened to me in weeks. My right calf has been twitching 24/7 for 8 weeks now. I´m twitching on the arch of my left foot, my thigh, butt and left arm. (almost constantly) The fingers of my left hand sometimes feel stiff... After the twitching started I googled "fasciculations" and from that time on I was a nervous wreck thinking I have ALS. I lost 5 pounds and fell into a deep hole. I saw a Neurologist after twitching for 2 weeks. He did a neuro exam, no EMG though, looked at my calf and said "BFS". I was relieved for about 3 hours, then I started thinking that he couldn´t possibly know for sure without an EMG and my worries started all over again. 1 week ago I went to another Neurologist. He, too, did some exams AND and EMG. However, he only tested one muscle since he was in a hurry to go to lunch (I am not kidding, he did the exam with the coat under his arm!!), told me that muscle was ok but to be really sure, he´d have to test at least 3 muscles.- then he left. Thanks for nothing. So here is what I have: 2 Neuro exams ok, unfinished EMG ok. Diagnosis of BFS by the first neuro. I´m still not 100% convinced I don´t have anything terrible. The good thing: I still walk 12 miles every weekend without problems. The bad thing: my symptoms change. My calves feel like they want to cramp sometimes which is new, and the muscles of my upper left arm started twitch like crazy. (new hot spot?) I also experience an increase of twitching after walking a lot. I´d appreciate some reassurance and apologize for my english, I´m writing from Germany. thanks guys!

Most probably the reason they are not testing you a lot is because they know what als looks like and you don't fit. Most neuros (the ones with diplomas) can easily catch it in a routine exam so they are doing the emg just for your peace of mind as they feel they already know what you have. Why not call up the last neuro and talk with him (phone consult) instead of worrying so much? You will find that twitches often increase with worry (a well-established pattern many have found). None of yur symptoms sound unfamiliar to me. I suggest - after walking you do a good cool down with full deep breathing and gentle stretches (use a bottle or ball to step on to stretch the arch.) Your english is good by the way.

Sounds like absolutely bona fide classic bfs to me...twitching in calves?checkDoubting your doctors?check als fear?check"worrying" new symptoms? checkyup listen to imok the docs know what als looks like...if they were worried they'd be following you up...not worried about lunch...they are not monsters!!!If it makes you feel better I had 2 neurologists examine me and see my 24/7 calf fasics and still manage to look bored. They were 99.9999999999per cent sure that not only did I not have als but I had no major issues.Trust your doctors...

Thanks for your fast replies. I did call the 2nd Neuro and talked to him. He told me not to worry for now and to come back if my tongue starts fasculating. I hadn´t thought about my tongue until then.... Won´t go back to him, that´s for sure.

Sarah,sound like bfs .the changing of symptoms and twitching areas is something almost every bfs-er experiences. every few week my twitches move to another area, thigh, shoulder, foot... ( but 85-90% right side), cramps came up when i was about 3 months into this. like AllGoodHere said it might be helful to give your neuro a call- i did the same and it helped me to understand that she really wasn´t concerned at all and calmed me a lot. she was very nice and explained everything to me and told me again and again that i don´t have als.i am from Emilyomousey also... feel free to pm me anytime.Smiley_20

Hi,Click on my screename and read my earlier posts. I too suffered and still suffer from everything you mentioned. so does virtually everyone on this board, many people for years. ionyZarrion is great for helping put the numbers in perspective, so read his posts, also read BFS in a nutshell. I know what we all fear is not as infrequent as the odds of getting struck by lightning, but for certain age groups it is. really. Best thing to do, keep walking, stay off Google/internet (it literally destroyed my life for many months), and with the passage of time, you will heal...I am still worried after two emgs, and still freak out, but the people on this board help me to keep things in perspective, use us. Best, Victoria

To be honest, it does sound like classic BFS to me. I would not worry. If the neuros were really concerned they would have said something,and I am sure lunch would be the furtherest thing from their mind if that was the case. I dont believe there are any concerns for you beyond Benign FS. Chill, take a breath and stress less.cheersRodger

Hi,Darr is right about the tongue phase I went through it too. My neuro told me it is normal for the tongue to twitch when we stick it out. He said let it rest in mouth before evaluating for twitches. And he also said not to mistake at rest tremors for twitches, the former are normal. I got tired of looking and trying to figure it. I'm in the I've got calf atrophy phase now. Hopefully this too will pass and I will get answers next week. Hang in there. Victoria

Ok ionyZarrion's explanation is SPOT ON! That is exactly what I did. And I mean EXACTLY!!!!! Every part of what he said was true, and in chornological order. Right up to the hotspot, and everything. I noticed cracks, and bumps. Guess what.....all gone now. What a wild ride. And we all do it. It's like we all read the same worry wart book, and had to follow each step. Or maybe the "force" binding us all together, and we are actually jedi's.Bottom line....you are fine....and this too shall pass.....

stage 2 bfs, i like that. i spent an hour while on my family vacation at 3am staring at my tongue in a mirror in the bathroom. i was convinced it was twitching then i felt like it was too big to fit in my mouth. that was in July, i think i am at stage 3, psuedo acceptance. You will eventually tell your friends the crazy crap you do and drink beer and laugh like crazy. keep smiling.

i can't take credit for that, i stole it from Darr.

You know how many times I checked my tongue out while driving? I can only imagine what the people behind me thought. I can laugh about it now.

lmao BarbiePetals, Its hilarious how we are all the same...seperated by huge distances, culture, gender, race and age and here we are a group of people doing the exact same weird little quirky things in different corners of the world...its the only part of twitching that makes me smile.Ignition, seatbelt, check mirrors, check tongue, engage gear....wait... what was that 2nd to last one Darr????Hilarious.The tongue story that we all laugh at now is when I was in one of those restaurants that use mirrors to make them look more spacious and luxurious when they are actually poky places. Being in my 1st month of twitching I was totally self absorbed and after the waiter took our order I totally unconsciously started sticking my tongue out and examining it in the mirror. When I was satisfied that it was twitch free I turned around only to see my Mother, Brother, Girlfriend and the adjoining tables of people staring at me in utter disbelief!!!!Ohhhh the embarrassment...What was I thinking?Hilarious looking back.

You can't imagine some of the crazy strenght tests I did. Of course the old walking on tippy toes and heels, jumping jacks, hopping on one foot, hopping on one foot going up and down my steps, checking the size of my muscles in the mirror, opening jars, lifting heavy objects. The list goes on. I would even try to do the babinski reflex on myself. I was insane. It goes to show what fear can do to you. Like I said, I can laugh about it now but it sure wasn't funny at the time. I know what the new people go through with this stuff.

) BarbiePetalsit´s good to hear,that others do the exact insane stuff... I still hop up and down the stairs; also tried the Babinski reflex on myself (no successs..) I´m not so worried about my tongue. What´s worrying me more now is that the muscles in my left thigh are twitching like crazy now. So far, my left side was pretty much ok and now this. I got up at 4.30 this morning because I couldn´t sleep with all that thumping going on. this is the worst it´s been so far and I´m starting to freak out again. I can´t figure out why it´s getting worse. I did have a really bad day at work on tuesday but can this really be the cause for it???

Can I please get off??????Went back to the Neuro today (the one that was in a hurry to go to lunch) I told him I was a nervous wreck because of the new symptoms. He looked at my twitching calf, checked my tongue and then agreed to do another EMG. He tested the same calf, different muscle though. Nothing! -he did see some sponaneous fascs but nothing abnormal. Why is it then, that I can´t relax. I mean, I´m being told everything is ok, no ALS and I should be jumping with joy and instead, my muscles still go crazy and I just can´t relax. What´s wrong with me????

Being a wreck for a while is what all of us go thru because of the black hole we create for ourselves. We just have to work on positive thoughts and quit thinking that if we say out loud i don't have the bad crap that it will somehow jinx us. This site has provided me with the support of im not alone in this and now i am using that to power thru the anxiety i still get on occasion when the thumping and twitching hits me on a bad day. i have been tested more than a lab rat and all has been normal and after 6 months, going on 7 months it is starting to get much better. It has been said by many posters that being busy is the best medicine and i agree 100%. I think everyone here wishes that we could be told that we will never get this or that but when we realize that just isnt the way life works and we have to make peace with that in our own way. The only thing that is very important is not to waste today, do everything you can today and don't look back. My philosophy on that is that i owe it to myself, my family and to the people who wish they could do the things that i am fortunate to be able to do. Sorry for the soapbox response, just felt good to say it out loud.

I can say it once or a million times. The only medicine for BFS is time. You know how many times I was told I was fine but didn't believe it. Even after 19 months some days I still wonder what this is but you just have to push forward. You will get there but it will take awhile. We have all been through this and are just fine.

The mental and emotional acceptance of this condition is a marathon not a sprint. We have have our own time tables. I am 3 years in and it is still a struggle for me at times (only because I feel physically worn down all the time). There will be many ups and downs on your road to mental healing but things will improve.

Alright do yourself a favor. Since you are having trouble believing your neuro. When you come to this page click on the thing next to the message forum that says web links. Go to the medhelp site, and read away. There are hundreds of posts about people with twitching, and the neuros keep telling them the same thing. Twitching without weakness, wasting, atrophy, or reflex changes (and no brisk reflexes don't count since that is also a sign of anxiety) mean nothing. I don't know if your neuro gave you a diagnosis of BFS or not. Mine did not, just called it benign twitches and sent me on my way. and don't listen to the crap about it becoming something else. BFS does not morph into another disease, any more than it will morph into cancer. The bad twitches come after weakness, wasting, atrophy not before. It does not mean you will never get a serious disease, it just means your current twitches ARE NOT!