New to Forum: 13 Months of Twitching

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secStreamlabs

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Hi everyone ... I am new to this forum but I have been twitching for almost 13 months. I have done 1 emg and it came back normal except for one little twitch during the test.i have been to several neuros and all gave me the bfs diagnosis. I have been having a lot of your symptoms like heavy leg and burning arms , tingling and so on. I developed a constant twitch in my right foot for the past 5-6 months and now recently my right foot has joined . Both my hands are also now tingling and twitching... I wouldn't say nonstop but they both twitch a good amount. I am also very shaky in my hands and jaw muscle . I have read somewhere that twitching in als starts in hand and feet and mine are mainly in my feet and occasionally my hand and this worries me a little bit. Has anyone experienced this before ? I would really appreciate your comments .
 
Hi,my sypmtoms are similar like yours. I am 12 Months in this BFS-thing now. It started in my calves and stayed there for about 4 months.The rest of my Body since there is also twitching but not this common. After that 4 months the twitching in my calves where better and this ist till now. But I developed strong twitching in my feet now since 3 Months. First only in my right feet and now also in the left one. Non stop and extremely more worse after workout. The same is with my Hands! My fingers junping if I try to hold them still.My most common places for twitching are my Hands, my feet and a bit my calves.My neuro said that in bfs the symptoms are getting more worse for about months or years until the "badest" Point is reached and than it stays as it is or will become better...Andreas
 
I cannot say that I have much cramps, but since onset my cramp-tollerance is getting lower over the time. My most common places for cramps are my feet, my calves, my tongue-bottom and my muscles between my ribs. Before BFS I never got cramps but now from time to time it happens. I´m sure that this is BFS related.I hate BFS because it has taken much life-quality and makes me really feel bad and depressed some day, but I´m also thankfull that it is not ***. My symptoms are also getting more worse since onset but I try to beat it with hope and time.Andreas
 
Time passage is important. Try not to focus on time (easier said than done). That way its passage seems faster. Over time, as symptoms become familiar, peak and valley, your anxiety and worries will decrease (hopefully). Hope you feel better.
 
Hi Twitchpar, welcome to our club. I identify very much with your post. I've been aware of the twitching + for about 10 months. It has moved and changed a whole lot. Right now I'm having about the worst time of it yet. My feet and calves have been twitching and vibrating non stop. Actually, the left foot has been going, I kid you not, almost 24 hours per day for about 6-7 months. It is like a very fast twitch, vibrating sensation that seems like I'm standing on an air conditioning unit. It also is happening more frequently on the right, but not so constant. I get briefer sensations like this in the arms and hands. I have not had the burning sensations, but heavy feeling forearms and also seemingly a bit swollen. Today is by far my worst cramping day with both feet (this used to happen only at night) and also my left hand, abdomen and back left ribs. Let's see, what else? My twitching is widespread, but concentrated more on the left side maybe 75/25%. It is all so disturbing. Just doing my best to carry on. I do believe this is benign in my rational moments, its just this bfs is so darn real and mysterious and quite rare. Twitching is common, but the whole SYNDROME is bewildering. There are hundreds of people like us who have passed through this board. Keep us updated on how you are doing. Where are you from and how many neuros have you seen? One of the most helpful things on the board is the COLLECTIVE information we have gained through literally thousands of neurologists we all have seen. So, it is always helpful to report what you learned, direct quotes, etc...At least I find it so. All the best to you my new twitching friend!
 
Thank you all for your responses. I am from Orange County and everything started from having acid reflux and I started panicking about stomach cancer ... I went through series of tests and they all came out normal just some acid reflux then I started getting dizzy and of course thought the worst "brain tumor" then I found a lump in my arm that was attached to my arm muscle and the doctor said it's benign but it went away and the minute it went away the twitches started. I guess I'm more terrified because my uncle passed away from als. But no one else in the family including his 5 sisters and 4 kids don't have any symptoms so I'm gussing and hoping it's not a familial case. I am turning 27 next week so I keep telling myself I'm too young for this . I have seen 3 neuros one in ucla neurology and one in uc irvine and all seem to be very good doctors and they all laughed at me when I said als. So it was reassuring for a while but I can't stop thinking about it. My fiancé is so tired of hearing about it that I'm sooo embarrassed to talk about it anymore . He's been patient enough lol. I have done one emg and I had to beg my doctor to give it to me she was that sure that my condition was benign but I still did it and everything was normal except they saw a couple of fasics in my thighs . The neurologist said it is a good sign that nothing else was seen along with the Fasics. Ever since then the only thing that makes me feel better is this forum . Not that I am happy that you are all going through this annoying nerve wrecking syndrome but that I'm not alone. Both my feet are going constant ! I mean I feel tingling but every time and I mean it every single time I look at them they are twitching . My calves twitch a lot too but not constant ... My hands tingle and twitch several times a day . Hopefully I can get over this fear soon.
 

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