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Benign Fasciculation Symdrome

Discussion in 'General Discussion Subforum' started by Nick8781Iade, Jan 17, 2022.

  1. Nick8781Iade

    Nick8781Iade Newcomer

    Hi, I’m a male, I’m 40yo., since October, I’ve been having fasciculations in my body. Some cramping and tingling as well. In early December, I went to a neurologist for nerve testing, EMG and a clinical assessment. The neurologist was a professor and the associate Dean at the University of Vermont. So he wasn’t some slob.

    The paper work he sent me was normal. There was no sign of anything wrong. He diagnosed me with BFS exacerbated by anxiety. I do have underlying anxiety.

    I still get twitching, tingling and cramps. It has not gotten worse. I still have no weakness or atrophy that I know of. The twitching occurs in my calves, toes, hands, stomach, back, shoulders, buttocks, neck, jaw, eye, thighs, and feet. It happens when I’m at rest mostly.

    However, I have read 3-4 studies where people who’ve been diagnosed with BFS develop ALS like year later. In some cases, even two years. And several sources I’ve read state that doctors should wait to diagnose 2 to even 5 years for BFS due to the lack of understanding of the condition.

    There seems to be two schools of thought here. The first says that the twitching in ALS is a result of the dying of nerves having already occurred. This is NOT the consensus though. And some experts believe that twitching can be a precursor to weakness and atrophy for an extended period.

    In your opinion, what is my risk level here and what do you think about the information I’ve provided. Obviously, I will follow up.
  2. michaelg21

    michaelg21 Peer Supporter

    With a clean EMG, and acknowledged underlying anxiety, your risk of ALS is likely no higher than anyone else on the planet. Yes, there are cases of ALS in which twitching preceded weakness, but this really is a rare presentation. Clinical weakness is almost always the first sign. Of course, you’ll find case studies or case series with patients presenting with fasciculations before any notable weakness, but I also read a case study in university of someone who was diagnosed with MS, with their only symptom being an eye spasm. If your doctor told you that you’re fine, believe him. Don’t fall any further down that ALS anxiety rabbit hole, it literally ruins people’s lives. Also BFS can be a rabbit hole in and of itself. Persistent twitching is pretty common in somatic anxiety. Most people just don’t freak out over it. You can completely rid yourself of the twitching if you learn to accept it and stop adding fuel to the fire.
    Last edited: Jan 17, 2022
  3. Nick8781Iade

    Nick8781Iade Newcomer

    What a great fucking answer. That was like the best answer anyone has ever given me. I think it’s extremely correct. Thanks man.
  4. michaelg21

    michaelg21 Peer Supporter

    Not a problem brother, I’m speaking from experience haha. I’ve been where you’ve been, it’s not a great place, but you can and will get through it. I had ALS anxiety because of perceived weakness, then came the twitching. I’m much better now though! Still have some symptoms but they’ve been diminishing a lot. Hope you start feeling better soon.
    Nick8781Iade likes this.
  5. Nick8781Iade

    Nick8781Iade Newcomer

    Yeah, it’s good to know other people deal with this. My wife thinks I’m a nut. But I appreciate the feedback. Thanks again
    michaelg21 likes this.
  6. fridaynotes

    fridaynotes Well known member

    omg, i deal with this all the time~ muscle weakness and twitching~ spooks the hell out of me. in fact, i wasn’t feeling it tonight but upon reading this post, my arm has just started twitching. isn’t that nuts?
    in my personal opinion, much of what you describe seems like classic TMS.
    it’s scary as fu*k when it’s happening~ but if you can learn to see the symptoms as harmless sensations, you will diminish their power over you. that viewpoint had really worked for me.
  7. michaelg21

    michaelg21 Peer Supporter

    The power you allow symptoms to have over you is a factor I think can be easy to overlooked, and it’s something I still struggle with from time to time! Even once I came to accept that my symptoms were purely from anxiety or TMS, I struggled for a while with understanding why they wouldn’t improve. It wasn’t until quite recently I realised that although I know they’re harmless, I was still worried about them. Just instead of worrying about them being indicative of something serious, I was simply worrying because I don’t like how they feel and I didn’t want to have to keep feeling them. In that sense, they still had just as much power over me as they did when I thought they might be something serious. Since realising this though, it has been getting much easier to just accept the feelings for what they are without dumping extra fuel (worry) on to the fire.
    fridaynotes likes this.

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