10 Years of BFS: My Story

[amyfisher]

I have had BFS for 10 years - 100s of twitches daily legs , arms, chest, feet, etc.... In the beginning, I freaked out like everyone did when I saw ALS as a possibility. I have actually been to 3 different ALS Centers to see neuros there over this period of time. All have said I have BFS. I have had 3-4 EMGs over the years and clinical exams too numerous to count - all normal each time. Every 2-3 years, I get freaked again. Usually an article I come upon about ALS will spur me back into the anxiety vortex again - or hearing about someone I cursorily know being diagnosed with it can send me there. this time...weirdly after all this time, I got my first tongue twitch. NOT happy about it - on the left tip of the tongue, like a strong contraction I can both see and feel a few times each day. No other issues with the mouth - I chew, swallow and speak just fine.My lips also feel a little tingly, and like I have ants marching on them, but when I look - there are no twitches there. I ran to the top neuromuscular guy at Cornell here in NYC and he said BFS again. Said tongue twitches can be normal, they just freak people out cause they are less common than other twitches. He did a clinical exam and said I was fine... he asked if I wanted an EMG to further calm my concerns. I turned it down trying to be brave mentally and take the clinical exam for its assurances. All normal, no weakness, normal reflexes, etc...But I am still freaking.... I mean after all this time, and now I am freaked again.ANYONE share more on what they have been told about the tongue??? please.

 

[MarioMasher]

The tongue is a muscle just like anything else. It means nothing.

 

[Krackersones]

Your long history of normal findings except for twitching is as reassuring as it gets around here. But I totally understand how the tongue thing is among the most anxiety provoking of all this stuff. I had it from the very beginning and it persists a few times daily and has for the last 18 months. If you search my user name and the term "tongue" you will find lots of reassuring info that I have collected on here or at least lots of support that it is just another muscle/nerve area that can manifest the same symptoms as other body parts without being a "sign" that something different has developed. Let me know if you have trouble accessing it.Krackersones

 

[simonw00]

Great to hear from someone wh has had BFS for so long and is still perfectly well! I don't believe there is a single ALS patient out there who would tell you that they noticed a tongue twitch as their first and only symptom. On the other hand, many of us BFS sufferes have had tongue twitches at various stages - try not to worryregardsSimon

 

[smallsarah]

I have been twitching for 12 years. My twitching continues to worsen, but it is BFS, well my neuro is thinking channelopathy, but anyway nothing sinister and I have found that tongue twitching has never been as aggressive as twitching in other areas. It seems to me that the larger the muscle, the quicker it tires. That is why the small muscles around my eyes twitch 24/7 and I sleep very little any more. I have had this problem for years and have only been intermittently troubled by tongue twitches. Any muscle can twitch and none is more serious than another.Shirley