Benign Fasciculation Syndrome (BFS)

Posted , 7 users are following.

Has anyone else been diagnosed with BFS, or BFS with cramps?

I am a 39 year old male who is currently on no medications.

My symptoms started about 10 months ago with twitches that spread all over my body. I saw my general doctor and eventually two neurologists before getting this diagnosis last month.

I've had multiple blood tests, x-rays, a MRI of the brain and spine, and and EMG test, as well as multiple exams in neurologists offices. Everything has come back normal.

Over this time, in addition to the random twitches, I have also experienced:

  • Burning/tingling feelings (in random places for a brief time, similar to the twitches)
  • Minor issues slurring a word by not correctly forming a letter or word
  • Increased clumsiness when reaching for or moving something in my hands (but not dropping things)
  • Stiffness in my hands, fingers, and knees
  • Slight tremors in my fingers and hands

All of the symptoms come and go from time to time. There are days and times when I feel fine, or my issues are in one part of my body. Later (hours, days, weeks, months) an area will improve and somewhere else will start to have issues.

It is annoying and frustrating, but has generally not interfered with my daily life, other than to up my anxiety level. I have been misdiagnosed before. I try not to think about it too much. Sometimes my mind goes back to negative thoughts, especially that they could be wrong and it could be ALS, but I try to ignore those thoughts when they happen.

I am going to go back to my neurologist next month and try a nerve blocker medication and see if that makes things any better.

Just looking to hear from others that have received this diagnosis over the years and see if they've ever tried a medication and if its made any difference and how they have dealt with this condition.

Thanks.

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  • Posted

    Ive had all those symptoms for 12 years now..burning...widespread twitches some with pain some with out..i freaked myself out at the beginning thinking i had ALS ...everyday i obsessed over it...the more i thought about the worse the twitches were..i went to the dr a lot of times they all said i didnt have ALS but of course i didnt believe them i knew i had it...i went thru all the trembling fingers ...thinking i had the slurred words...i ask people am i slurring my words?..do i sound like im speaking in a nasel tone( since thats a symptom too)..if u dwell on it it will only get worse...everything you wrote in your message ive gone thru...everything...its been 12 years for me...its not easy to let it go because everytime you get a twitch or feel like you have a hard time swallowing for some reason you go right back there again...i still get twitches from time to time even the ones that hurt but i dont really think about it to much...they are definitely not like they use to be..if all your drs said you were fine i would believe them or you can write a message 12 years from now just like im doing..and believe me the twitches do come and go...i could go weeks or months without any and then all of a sudden i would get them widespread again...believe me its crazy....all i can say is hang in there and if going to the dr makes you feel better then go but it sounds like you already went and got all the tests done and they all came back normal ...

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  • Posted

    ALS is literally the hardest disease to diagnose, because so much has to be ruled out like ALS mimics, auto immune and other neuromuscular. ALS also shows itself in every single patient differently which makes it even harder. The docs arent kidding when they say it takes a year to fully diagnose and by that time some people are so severe they cannot be helped. The good news is, its so rare that i would assume thats the absolute last thing you should assume you have unless you have a direct parent with the disease or had it. I have every single symptom you are describing and ive been diganosed with EBV. Ive spent thousands chasing an ALS diagnosis and i still dont have it even with 6 months of the same symptoms. Unless you wake up one day and you can no longer do something like button a shirt or lift a glass of water i would steer clear of looking up ALS. It will drive you crazy. I almost lost my family chasing ALS. I wish you the best.

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