11 Months With BFS: My Story

Most of you know my story. Novemeber the 1st will mark 11 months into this b.s I mean BFS. It first started out a thigh twitch then over night ignited to all over my body random sporatic pops. Went to neuro had EMG done on full right side and a lot of re insertions etc. She said and believe it or not 100% no ALS. She actually told me that before the EMG but she insisted I did it to get past it.I got past it for awhile . I got the EMG report and read REPETIVLEY "There are NO SIGNS OF ALS" patient has BFS. Ok . So life goes on. The past few days I've been on this board because I have had flare ups. When I had this b.s twitching before alnost 2 years ago..I never was scared or googled I went to a GP he said ANXIETY ok so be it the crap went away. This go around I googled and got the WITS scared out of me.Your more than welcome to search any of my post. Well I NEVER had any feelings on the tongue that I can recall but NOW every no and again I feel a zap on the tongue. Almost like electricity. Like I licked a battery or something.I stare at my tongue in the mirror and I dont see anything. I've NEVER seen it twitch for say. I cant even say if its a twitch but its just a "zap". Not constant.Well its braught anxiety to me. Now I think I talk funny however everyone else understands me and @ times I dont even think about it. I am constantly tinting my cheeks, making my tongue shape like a taco etc. lol Yeah crazy I know but ...It makes me feel better.. I think what hangs in my mind the most is..The ONE article I read from the Medhelp that a CCF said he had asked a ALS specialist at the clinic if its common to have benign twitching on the tongue. The man said he had NEVER seen a case were true fasciculations on the tongue were NOT ALS. DONT FREAK OUT PEOPLE. He went on to say...what we or he/she the person writing was feeling could not possibly be a true fasciculation on the tongue.That being said I have spoke to many of you that have said your neuro is NOT worried about the tongue either. I spoke to a close friend of mine whom said that his neuro SAW his tongue twitch and said...."thats not what were looking for"..! I need someone to talk me down off this ledge and get my mind right. I know I am ok. I am 24 months plus 11 months into this go around ...meaning this happened to me 35 months ago and went away with a big break only to come back 11 months ago nov the 1st.Should I go back and worry about the tongue or just accept it?I think I know the answer to this but I just need to hear it from you guys and maybe any tongue twitchers out there.

Lovely, knock it off. You already know the answer to this. Now you're just stealing bandwidth. ) There, does that help?

Yea... I read a neuro's blog about what he saw when he diagnosed "bulbar" onset ALS, and from what he said their tongues look like a bag of worms, and usually by the time your tongue is twitching you're drooling all over yourself.If it makes you feel any better, I've been imagining slurring in my speech all week. Everyone around me says I sound no different than I normally do. Like I've said in another post, I think when we think about the actions we're doing that should be auto pilot...we screw things up. On top of that I was taking a shower before school and swore I felt the front left tip of my tongue tense up or "twitch"... sometimes I think its just me running my tongue across my teeth...then again...if I would have never heard of these "symptoms" to look for I probably wouldn't have even paid any attention to that feeling in my tongue.So I'm going to tell you...you're okay.... I'm sure I'll need you to tell me the same sooner or later ... especially days before my EMG...

Hi Dee Dee: I've wondered about you a million times. Girl, I know and you know that you are okay. Remember when I was scared about the tongue twitch?? I still have an occasional jolt and sometimes I can see it on my tongue just like I could on my leg or arm. It is nothing. I finally saw a neuro and she told me no ALS - she had seen and diagnosed it many times and it didn't look like me. Dear, don't let this fear come back to you. Kick it in the butt now! I don't visit here real often anymore, because, well, because I've been doing other things. It has taken me a LONG time, but I have finally accepted that I really don't have ALS. You don't either. We've both been at this toooooo long, but get scared again. PM me and tell me about the baby!!!BlessingsCindyBTW - I'm cindyandco now, not onescaredlady

When I first got tongue symptoms they were so faint that I really thought I was likely imagining it or being over sensitive to what my body was doing. As the symptoms have occurred now for months on a mostly daily basis, I know I am not imagining it. Thankfully, the symptoms happen only a few times a day. They are never constant. The sensations include electrical shocks that are quick but strong enough to really grab your attention, tiny tingling sensations, and the feeling on tiny twitches/pulses. I have had them on the sides, in the middle, and under my tongue. I have similar symptoms periodically around my chin, cheeks, and lips. The one possibly reassuring thing that I've thought about recently is that when I went to see the Dr. Engle (the best specialist I've seen so far and the Vice President of the MDA) I told him about my tongue symptoms. He never asked me to elaborate and never even asked to look at it. I mentioned it several times and it just didn't seem to make him change his plan of action or thinking. He told me after the consultation that he was 99.9% sure I didn't have ALS. He did mention a condition called hypoparathyroid which is very rare. I'm being tested for it and will know the results on or around November 5th. If you google this condition you will see that one of the symptoms is tongue parasthesias and widespread twitching. The tests for it include a calcium ion test (not a blood serum calcium test) and a hypoparathyroid hormone level test. I am speculating here but if your nerves are hyperactive, I've never seen anyone say why the nerves in the tongue would be immune to whatever is happening to the other nerves in the body. I guess this is why neuros have said "its just another muscle" in response to complaints of tongue symptoms. Also, because the tongue is not covered in fat. I would think the smallest sensation there would be noticed very easily.I have had my tongue symptoms since July and still talk nonstop all day (I'm a teacher) and have no problems eating or swallowing.Search my posts on the tongue and you will see a very reassuring bit of info from a women who used to be on this board who has had tongue symptoms for many, many years and is still fine.This tongue stuff still scares me but I'm trying to stay rational. Any info from others on this subject would be appreciated.Krackersones

hi dee dee-- i know the med help comment you are referring to-- it says something like " i asked dr pirio about the tongue and he said he has never seen benign fasics of the tongue and doesnt think they exist " or something like that-- that one has gotten to me too-- but what helps me about that one is that the "doc" who wrote it (intern?) had to go and ask someone so the information could be lost in translation, it is an "older " post ( from what i recall ) and because it was really the only one i found like it... most others, including one medhelp response i just got from a doc ( which i posted ), say what we all hear more often-- that in the context of a good clinical or emg, it is not concerning...i have received many responses from people on this board helping me about my tongue-- which by the way REALLY TWITCHES.. i have seen it-- that will freak you right out-- many people have had tongue twitches-- I have seen 3 neuros-- one just wrote down that i have tongue twitches ( after he did the standard tenting and examining), one i mentioned to the intern-- and the doc told me to take more xanax and looked at my tongue and said nothing, and the other, most recent said "he couldnt really explain the tongue fascics but that he didnt see any when he did my exam"-- he also didnt write anything about it in the write up he sent to me other than tongue was midline...and i have felt the kind of buzzing thing you are mentioning as well as twitches-- little ones. big ones...i go back to johns hopkins in november and he will definately be looking at my tongue again... but from all i have gathered, i am feeling like it is just another twitch-- in fact, my gp was kind of perplexed as to why i was even concerned about it- so.....I can relate-- but you have to stop torturing yourself... and stop looking-- ( although i know that is easier said than done -- i look in my car rearview at it. i look in my mirror in bathroom, in powder room-- i look a lot but you shouldnt ) sorry if my thoughts are a bit random but i was trying to cover a lot of ground.

so i went digging Deedee......Here's the response to my med help post:Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor. Without the ability to examine you and obtain a history, I can not provide you with a diagnosis regarding your symptoms. However, I will try to provide you with some information. One thing that comes to mind when there are twitches of the body and tongue in the setting of a normal EMG is benign fasiculation syndrome. Benign fasiculation syndrome, which I will abbreviate as BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurence of a serious neurologic condition is low. Sometimes, fasiculations can be due to or made worse by caffiene, anxiety, exercise, and certain drugs. When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. If you feel treatment is necessary, this would be best discussed with your neurologist. Minimizing caffiene and stress, and treating anxiety if it is present, will improve your symptoms. Thank you for using the forum, I hope you find this information useful good luck Tongue twitchingby suzanne L. Here's another:, is tongue twitching in the setting of having already had body wide twitching for 6 years all over without weakness a more concerning place for a "twitch"?? I have heard a couple of different theories - that the tongue is a muscle and when it twitches it is just like any other muscle. i have also heard it is more a sign of motor neuron disease.i have been twitching all over for 6 years...I have had historically normal neuro exams and an EMG (over 14 months ago)...but am worried that now the few twitches on my tongue are a more serious concern. i do not slur, have problems swallowing, etc... Doctor's Answer by CCF-Neuro-M.D.-PW CF-Neuro-M.D.-PW Member since Mar 2005 , Oct 21, 2005 12:00AMTwitching that is widespread over time without muscle weakness and wasting is very unlikely to be ALS. Tongue twitching does occur in ALS with tongue wasting but this is just one very uncommon cause of twitching. Other common causes include benign fasciculation syndrome, an overactive thyroid gland, pinched nerves, spinal cord problems, or even just by CCF-Neuro-M.D.-JT and i belive that this is the one ?? it is the "answer" , i didnt cut and paste the question ..., Mar 08, 2003 12:00AMTongue fasciculations in the setting of ALS are usually within the bulk of the tongue muscle which is weak, partially or markedly atrophied (wasted away), and noticed on a careful examination by a physician rather than the patient himself. Not sure what to make of twitches in the tip of the tongue, but it doesn't sound like true fasciculations. I spoke to our ALS specialist Dr. Pioro who says he's never seen benign fasciculations of the tongue (not saying that it absolutely can never ever happen, just that he's never seen it and personally does not feel there is such a thing). Usually the patients that we see who have tongue fasciculations have the typical signs and symptoms of ALS that has significantly progressed (prominent weakness and muscle wasting). The tongue fasciculations are NOT the presenting symptom unless they are accompanied by markedly slurred or even absent speech, difficulty moving the tongue due to atrophy and weakness, and profound difficulty swallowing. These patients are quite sick and many of them have had dramatic weight loss due to the inability to swallow. It is not the portrait of a young person with twitches who is otherwise healthy with normal EMGs and neurological examinations. This far out, I think it's pretty to safe to say that it is very very very unlikely that you have ALS at this time. Good luck. I think it sounds like there is a difference between twitching and fascis here ... and it also sounds like in the absence of other signs it is less sinister.. ANYWAY, hope i have helped!

Notice that Dr. P said he has never seen benign tongue fasciculations and because of this doesn't think there is such a thing. This doesn't sound like the best medical reasoning in the world. Also, I bet many of the people here who have tongue symptoms would not always be able to show it to a doctor during the brief moment of an appointment when they took the time to look. This doesn't mean they weren't happening it just means they aren't constant and visible on demand. Moreover, some people have shown doctors the twitching and don't have ALS and there are studies of people with peripheral nerve hyperexcitability that show a decent sized-subset of participants with bulbar symptoms and none developed ALS. I will be asking my doctor to speak to the issue of why anyone would consider tongue symptoms different than any other symptom when it comes to nerve issues. I want to know if there is any scientific/medical theory why something benign (i.e. nonprogressive or seriously debilitating) could effect all body nerves but not the tongue.I'm sorry if I'm repeating myself but this is obviously a big topic for me. I'm just glad I'm not alone with it.Krackersones

Hey! It shocked me a bit, because a few days ago I started having the same feeling on my tongue - like very small electric shocks. So you are not alone

When I was googling around on the tongue stuff (I know it's a bad idea and I am usually good about not doing it anymore), I came across posts from people with neuropathy stating that you can have neuropathy on your tongue. So again, more evidence that if you have nerve issues they can impact the nerves of the tongue just as they would your feet or hands etc. Also, tingling from low calcium ions can effect the tongue as wells as other body parts. Another fact that shows the tongue nerves are not special.

hey all - saw this old "tongue" post and saw that "papillon58" had grabbed a question I had asked on Med Help about 5 years ago about tongue twitching and reposted it here.In the post I wondered if after 6 years of bodywide twitching, could tongue twitching be ominous? The neuro basically answered "no". I am still here ! No bulbar ALS. I have my yearly neuro exam planned for March 4th - but have had clear neuro exams over the last 5 years. I do have to say the only twitch that ever does scare me at all anymore is the tongue. When my tongue does twitch occasionally, it usually sends me into a day or two of googling, and concerns. Not sure why - it is my "achilles heel" in this whole BFS mess. And I do find that even though I rationally know after 10 years of twitching, this is NOT ALS - I do have re-flaring up of my anxiety that gets me concerned all over again.... it is the only health anxiety I get - any other symptom (e.g. stomach issue), once a doctor has run a test and told me "you are fine" - I accept it, and walk away. Not with this, tho.I do ask my neuros about the tongue - they say it can happen in BFS but is not the most common location of twitching, thus it cause anxiety. Maybe Dr Pioro would change his opinion, now that neuros are seeing so many more people with BFS these days.On the ALS boards, the most common first symptom of bulbar ALS - nearly 8 of ten of them - is slurred speech and then hand weakness.

suzannelin,Thanks for your reassuring info. As you related, reassuring info about tongue twitching is always needed for those of us who have it. My tongue twitching hit at the very beginning of all this for me 18 months ago and happens at least once or twice a day. It has never progressed from what it was in the beginning and I have never had any slurred speech. I sometimes feel I can trigger a twitch if I am pressing on my face with my hand. Not sure if it is just coincidence though. I try not to give it much thought but like you it still triggers anxiety when it happens.Krackersones

Hi Tattooed,, ( I am also quite heavily tattooed by the way lol ) anyway some people here are starting to know me ,, I have been twitching since age 10 I am 47 now,,,, 5 years ago my toungue started twitching on the left side ,, it will still do it .. I am still twitching in all places ,different places everyday including someimes my tongue .. Nothing else has happened sice the toungue started,, so I am another one that is benign ... I think there are lots of us...

It's not often I look at my tongue these days, it is a compulsion I am well rid of.I looked today, and yes it was at it again, looks very asymetric as well twitching on the left hand side, never mind that dent, yes that one, it's still there, well it would be wouldn't it? it probably always was there before I even started looking and that was how many years back now?Nah I still slur my speech from time to time, and that does make me a little nervous, then again maybe it happens more when I am nervous.If the tongue twitch were a sign of ALS I guess I must be a minor miracle not to be pushing up daisies yet Right now I give myself only 4 years to live and that is a lot more than I thought when I started out here, if that tongue twitch had have been a dose of the bulbars I'd already be out of here.Why four years? well that is just an age at which my dad and grandad shuffled of there mortal coils, but there is no real reason or proof I won't outlive them both and if I do and care to look at my tongue, it will still be up for the odd bout of twitching I am sure.Oh and beta blockers, long term report since my last posting, stops tremors, but not twitches.

Remember PlayfulPantsYou are a product of both parents. How long did you mother and maternal relatives live? My husband always says he won't live long because none of his half siblings did. I point out to him that they are half siblings and he has some differnt genes in his make-up. Anyway, people are living longer these days with all the progress made in health care.Sandra D

Well, 81 is probably the average life expectancy for a man and 85 for a woman. So some members of your family have lived a long life. My dad was convinced that he would die at 80 because both his parents had died at that age. Yet he lived to be 87.

I have the occasional twitch of the tongue...Worried sick about it for over a year. I found out that uncontrollable movements of the tongue are present in TMJ Disorder, which I definitely have!!! Here is the test. Go get a glass of water and drinking it. When I say drink it, I mean do not stop, just chug it! If you can do that, you do not have bulbar ALS. If you can't do it, you still do not have bulbar ALS. But it just proves to you that your swallowing nerves and muscles are intact.