Reacting to BFS Diagnosis

[bfhopeful2]

I got my Neuro's report in the mail today as I am taking to my psychiatrist on Tuesday. It reads as follows."Impression: Benign fasiculations. These are due to lack of sleep, stress, and excessive muscle fatigue. I reassured patient that there is no evidence of anterior born disease or any neuropathy. "I would assume that this means he has diagnosed me with BFS. I have a hard time accepting it. The logical part of me says shut up and accept it, the other part of me says what the hell is benign. I mean I've been here for a little while, read BFS in a nut shell, spoke to several board members and shared stories. I get the fact that we are not going to die from it. But how is benign defined? Does that just mean that it's not going to kill me? A lot of things don't kill you, but interfere with your daily life. Does benign just mean I'm going to live? Can this thing get worse? I mean could the twitches come all day every day forever and keep getting worse and worse? Or is BFS self limiting? Meaning that over time it doesn't get worse? I am sure 100 people have asked these questions and they have probably been addressed 100 more. But I am scared and *beep* off. I feel like I have no control. Like any minute I'm just going to bust out in an all over seizure or something. Can somebody please reassure me. I need a good pep talk. Thanks.

 

[MarioMasher]

Benign just means that it won't get worse, and it isn't going to kill you. But you probably already knew that.Over time the twitches will lessen because A) it will start to go away, or B) you just won't care that much about it anymore. Either way, things do get better. Go back and read any oldtimer status report, they all say the same thing. The only super scary part of BFS is the first few months.

 

[AllGoodHere]

Don't get into the depression mode whatever you do! It really does get better with time - for some of the reasons Mario stated and many others. Some other possibilities: you learn to relax about symptoms and relax in general, you find ways of coping, your systems starts to heal, you learn how to better control your symptoms through exercise, therapy, meditation, or just stop doing whatever it is that brings them on, you find you can ignore symptoms much of the time, etc.etc. Others should chime in here but I can tell you it's gotten much better for me!

 

[MarioMasher]

By the way, here's a better way to think about the term "Benign Fasciculation Syndrome."Most people read that as "a fasiculation syndrome that's benign." But what it really is is "A bunch of benign fasciculations that happen for no reason." It's not the syndrome itself that is considered benign, it is the twitches. Remember, your twitches mean nothing. They are benign fasciculations. Everyone gets them. You just happen to have a syndrome that involves a whole lot of them. It's not benign "fasiculation syndrome." It is "benign fasciculation" syndrome.That's a much more accurate way to look at that term.

 

[SharonSmoove]

Hi,Well thats excellent news. It means its nothing serious your good to go. Yeah, i no it takes a bit to sink in, seems strange that you can have years of being all normal then all of a sudden your hit with the dreaded twitches. Unfortunately we are all a bit hesitant to believe that we haven't got something more sinister. But hey it's true you can twitch, ache cramp etc and still it's not going to turn into anything else. I no because I have twitched, cramped and ached for nearly 9 bloody years. Don't do the round of Neuro's there isn't any point, so many of us here have fallen into that trap , waste alot of money, stress yourself out even further. Believe you are well. You just have an alien living inside ya . You do get used to the twitches, and some days you wont even notice them, other days and I do notice this when I am under pressure they seem to increase. Believe your doctor, your test result would not be saying what they do if you have something wrong. I understand how you feel but it's benign don't waste the time I did trying to find someother sort of diagnosis because you wont.Take careSharon

 

[LindsayCohen7]

Congrats on your neuro visit! Benign means it will not progress - that's not to say that it won't annoy you some days more than others, or that you won't occasionally be frightened by new symptoms. But the twitching and other symptoms will subside once your body (and mind) heal. If you have the other stuff some of us get (tingling, cramping, PrickLedPins for example) the first time you get each thing it can scary, but you can come here to assure yourself that you're "normal" within this group of people, and then relax. The next time you get that symptom you won't be scared because you already had it and it went away. Even the medical professionals on this site post and ask if a new symptom is "ok." Be happy that you don't have a degenerative disease. You're justified in being annoyed at BFS - but be annoyed at the symptoms of what you've been diagnosed with - don't fear what you don't have.

 

[BarbiePetals]

I'm with you PrayMantus. I do believe my twiches are benign but I just knew what the heck caused them. But then again, there are tons of diseases that nobody knows what causes them. My son had Kawasaki disease (an autoimmune disease) back in March and the doctors told me straight out they have no idea what caused it. He is ok now but my point is sometimes doctors just don't know. Yes, it's very annoying to me that nobody can tell me why my body is doing what it's doing but I am taking this one day at a time. Everyone tells me it gets better with time (I sure hope they are right). Hang in there. At least we have this board to come too.~Leslie

 

[paucek.sheldon1]

Hello,Great news you have BFS. Well great news compared to some alternatives. I am 40 years old and stuff is starting to go wrong. I hate it. But this is the way God designed my body. Although looking at it another way, if I lived in the middle ages I probably wouldn't have gotten past 30.Some others have gotten 'over this' in months. Like an earlier poster it has taken me years. At least two. Maybe I am neurotic.I take Tegretol (generic form). It is really cheap. Maybe this has helped me. Or maybe it is time.I noticed twitching a few times a day now. I look around and most people who are 40 aren't looking so good. The exception being my beautiful wife; though maybe I am baised. Given that something is prrobably going to go wrong I guess this is better than some alternatives.I hope this helps to put this in perspective.-43RichyThe43rd

 

[priorityhigh5]

Accepting a "bengin" diagnosis, no matter what it is for, is not an easy thing to do. The time frame varies per person. I left my neuro appointment and never looked back. I have been fine anxiety wise ever since. Thats not to say that the Yuck Monster doesnt cross my mind...because it does, I am just able to kick its as*s and send it running much easier and faster now than before. Other people, it takes several years before they fully accept a bengin situation, such as BFS. The for sure thing is sweets, you have been dealt a hand that is VERY playable...so play it.

 

[beensuggested]

Congratulations on having a term or a name or a diagnosis. Good for you because there are some on the Board who have never formally been given a name. So take that as a victory. You KNOW what to call it. You KNOW what it isn't. Now let's talk about the rest. Benign...it means not malicious, it means it is not fatal. What it does not mean is not annoying, not worrisome. This IS a self limiting condition. And here is why...when you had gotten to the point that you were supporting others and at least had an inclination of what it was...you still twitched, you still had this but it was maybe not as overwhelming. Why? Because there were other things occupying that part of your mind that pays attention to the little details. You know we have a damper on some of our nerves so that the very sound of our hair rustling by our ears or the sound of our breathing or our pulses do not drive us insane. So when our mind is otherwise occupied and not trying to find every little twitch and ache etc we don't notice them as much. When you have a glass or two of wine...do you notice that your synptoms are not so bad? Again that is because the mind is otherwise occupied - usually having fun. So self limiting, which does not mean you can heal yourself and make it gone, BUT you can make it far less apparent by not working yourself up. You have signed yourself up as BFShopeful, I am assuming because you felt that would be the best scenario...so now your are BFSdefinite....time to stop paying attention to every little twitch and put it in the appropriate box and move onBE well kiddo!Smooches,Kit