Why is it that whenever I look through a list of medical conditions I never see BFS on it? Does it fall under a more general term? I also tried PNH with no luck. Is it truly unrecognized as a condition or am I not looking under the correct medically accepted term. It seems like all we have is wikipedia. Which isn't the most trusted source of information.It would seem weird to me that my neuro would diagnose me with something that isn't a condition that is universally accepted. In fact I would consider it a potential malpractice suit waiting to happen. I'd appreciate some further clarification for my flawed logic.
Looking for Medical Recognition of BFS/PNH
- Thread starter TyrianLan
- Start date
MarioMasher
Well-known member
The reason is because not everyone believes BFS is an actual "condition." To a lot of neuros it is just benign fascics. Same thing, just different labeling.
I used to be very frustrated by this as well....but my neuro was much like Mario's..as in he felt BFS was a crock of shyt....My dxs to date is "Fasciculations" and I didnt even have that until I begged him to do an EMG which I guess showed nothing but Fasciculations...so that was my label...he didnt even put the word "Benign" in front of it (still dont like that) but he was an ass..but he knew his stuff and he point blank said "You dont have ALS"...so I just dont stress over the label....But it is a bit frustrating to come here and see so many people say that they were dxsd with BFS and my neuro acted like I made a joke every time I brought it up as a possible reason for my symptoms....but Mayo Clinic says its real, and I have met a couple of docs online who have mentioned it before I did (this was back when I was still in panic mode and was desperate for someone to explain my symptoms) and now there are other members here with very similar presentations like mine...so I believe it is a real condition, I just tend to look at it like Fibromyalgia 30 yrs ago when no one had heard of it much, and no doctor believed in it......Medical Science...they dont know or recognize everthing....but I am still very hopeful they will acknowledge this one in the near future..Take careRobynn 
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)So, I was looking through a sticky post (one of these days I may actually get used to my twitching and not feel the need to be on this site 24/7 like I am now).This may help a little (from JM85, I think - I may have the name wrong):So we have in total: a neurosurgeon, a board-certified neurologist with a specialty in MND/ALS, and multiple other neurologists who have all said the same thing: This is BFS. It has gotten to the point now where my neurosurgeon friend makes fun of me and my twitching. He said he has never been so confident of anything in his life. He also said not to dismiss BFS as nothing. He said in med school and in residency training they take BFS very seriously, as it is a recognized disorder of the nervous system. Just because it isn't fatal, doesnt mean it isn't a real physiological response.By the way, I am at the University of Toronto, a leading academic institution that is INCREDIBLY competitive to get staff positions in the affiliated hospitals. So all of these guys are smart smart cookies.
I asked my neuro if they had to study any about BFS in neuro school and he started laughing and shook his head and then said "NO"...bummed me out pretty bad...but him laughing has pretty much stopped me from bringing it up with any other doctor I saw back during my testing days.
I was lucky I suppose because my neuro is a twitcher too..... 
...he even did 6 EMG's on himself over the years... 
..I him he has health anxiety and needs a good psychiatrist...he told me the same...anyway he has twitched for 9 years...so he most definitely believes in bfs...
...he even did 6 EMG's on himself over the years... ..I him he has health anxiety and needs a good psychiatrist...he told me the same...anyway he has twitched for 9 years...so he most definitely believes in bfs...In another thread I questioned if either age or education play any role into this. My neuro is probably on the younger side as far as experienced neuros go and he also spent part of his education at mayo. So perhaps this played into his belief in the condition. I hadn't mentioned it to my neuro at all but right after the emg he said, "there is something called benign fasiculation syndrome..." and then preceded to make that his diagnosis. I guess I took this for granted a little. And for whatever reason it seems much easier for me to mentally cope with it when it has a name. Not just benign twitching since my host of other symptoms don't seem like a casual occurance. For some reason this lack of recognition is hard for me to deal with. Does the mayo website actually list it as a condition? I thought I saw this once but could have been hallucinating.
sparksense
Well-known member
I understand your frustration. Seven years into this madness and I've never received any dx—only mentions of "benign fasciculations." Over the years I have experienced a myriad of additional symptoms, including tingling and burning sensations, but still the neuro's haven't labeled it anything. I've always referred to it as BFS because of this forum and the similarities in symptoms I have with other members.I have a follow up appointment tomorrow with my third neurologist. At this point I am not sure what I am hoping for except maybe giving some meds a try. Even though I know this isn't something deadly, it's still a bitter pill to swallow when I feel the non-stop twitching in my calves/feet, the pretty constant thigh twitches and the random pops all over.A few months ago I was complaining about my annoying eyelid twitching to a colleague when she told me that another colleague—her friend—experienced the same thing. Unbelievably, the friend didn't suffer from eyelid twitching, rather body-wide. I almost died when she said her neurologist said it was something called benign fasciculation syndrome.
I would have loved to have had a neuro that believed in it....would have made the symptoms so much easier to deal with....they seem much scarier when you dont have a cause for them....My neuro said there was no syndrom...said every symptom in the "syndrome' part was nothing but anxiety....I was very anxious with the symptoms so I could not really form an argument for him 
Yes I don't know why but it always seem to make things easier if we can put a name to it.....maybe that's the control part of us we like to have definite answers to our questions...Yes my neuro is great...I think I'm secretly in love with him...he is egyption and very very handsome..and of course I went for my EMG wearing knickers with baggy elastic and not even matching bra.... .of course at the time I was such a basket case it's amazing that I even had my knickers on the right way..not inside out and back to front..... ..oops too much info sorry guys....shan
.of course at the time I was such a basket case it's amazing that I even had my knickers on the right way..not inside out and back to front..... ..oops too much info sorry guys....shan Shannon you crack me up, seriously...I was such a wreck when I went in for mine that I wore a pair of very old black stretchy pants, hubbies T-shirt and my funky pink house slippers .....that day was seriously my lowest....I used to be one of those women that would never leave the house without makeup and hair done....I was so out of my mind with anxiety I some how convinced my self that any poor person that would see me would some how understand and forgive my scary appearance, when my husband got me through the office doors...the first thing out of the receptionist mouth was "oh hun, do you need to lay down until the doc comes into see you" Hey trajon,I'm sorry that your scared But bfs really is a condition, I wish u could all have my neurologist he is so reassuring and straight out he said to me bfs, when I asked him what caused it he said extreme stress, anxiety, viral illness, lots of things cause it..I think Mario explained it really well in one of his posts..he said we have fried nervous systems...and fried nervous systems twitch....