24/7 Twitching Frustration

Hi all,(sorry for the bad english writing - I'm Dutch)Just wanted to say I'm so tired of twitching...Since 20 Oct'07 I've been twitching, almost 7 months. Got 4 EMG's and 5 clinicals in the first 6 weeks of twitching.In the last EMG (6 th Dec 07) they saw a few fasciculations. A few??? How is that possible if my calves twitch 24/7. It frightens me to see that only a few people twitch 24/7. Now the twitching got even worse: calves and feet twitch and buzz 24/7, randomn twitches everywhere: back, neck, face, butt, arms... The ones in the face, neck and butt really give me the creeps. Is it normal that they get worse? I'm so tired of it all...of all the twitching, buzzing, vibrating, shaking, tremor, stifness, pain,cramps, weakness... My mind and body have had enough of it! When does this stop, I really cannot take it anymore. Never one minute of rest or peace. I'm still convinced that this an early stage of ALS although I got dx BFS .That I got the diagnose BFS is something I only know for a couple of days. I had some weird cramps in my legs and I was scared so I saw my doctor (GP in the States I guess). But she doesn't know a lot of ALS, never saw a patient with it. So I explained her about the relfexes and weakness, so she checked my relfexes and looked for atrophy & weakness, but she thought it was all fine. It wasn't very reassuring because she doesn't know anything about ALS. But in her computer she had an email from my neuro (from 6th Dec 07) that said: exclude ALS: we are dealing here with a benign fasciulation sydrome. A few fasciculations have showed up in the EMG - like I said before, how is it possible that they only saw a few when I'm twitching 24/7 ???Okay, they gave me the dx BFS but I guess I'm just that 1 in a million case that is getting ALS, the twitching , buzzing, shaking, pain, stifness is all to weird to be normal. I can't believe this is a 'good syndrome' I really had enough of it. When does the real als weakness going to start or do I just have to be thankful that I got a day more...sometimes I just wish that it all would be over very soon...Sorry for this very depressing post, just needed to say thisBart

If you had ALS and had been twitching for 7 months, I'm fairly confident you'd have noticed some weakness by now. And 4 emgs? My doctor won't even recommend me to a neuro for just twitching unless there is some other abnormality with it (and my doctor is familiar with ALS).

Hi there, ya my doc doesn't think I need a neuro either. He just says "lots of people twitch". Twitching by itself is benign. So, on and on we go. But, Bart, I understand how you feel. Somedays it really gets to me too. I'd like just one day without it and I am 8 1/2 months into this myself.Linda

BartHang in there. I have been experiencing all the symptoms you describe. I had them since Sept 2007. I had an EMG done on 2/22/08 and they didn't even pick up anything. Sounds like you have some pretty thorough tests. That should be reassuring to you.Have you ever tried any medication. My Neurologist put me on Clonzepam (Klonopin) and it seemed to help some. I took .25 mg prior to bed. My symptoms are more noticeable when I am sedentary.Stay to stay busy and positive! CDC

I was reading this post from swedishgirl fast help plz, and there was a link to youtube about muscle twitching...but this lead me to ALS vids, I saw that 29 year old girl with als, my age...it took a year to dx her with it, I got the BFS dx in 15 minutes? I think they are so wrong.In the vids they were all talking about twitching...I don't get in anymore, every day I'm getting more and more convinced that I got a slow unset or wrong dx. I'm really going trough a hard time now.

Bart you really are worrying needlessly. Take comfort from your doctors giving you a diagnosis of BFS /C. 7 months twitching is a fair time without severe weakness, weakness such as fastening a shirt button...holding a paper cup, turning a key in a lock or unable accerlate your car with your foot. You really would get the weakness such as ive mentioned before you'd notice the twitching.ATBGuy

Hi there, are we sure you get the weakness BEFORE the fasics? I am surely hoping so. I have been twitching for almost 9 months and I am getting weary of it. I feel pretty good otherwise, but the twitching makes it impossible to forget all the scary stuff. Linda

Bart - I get freak t out about what you wrote. Im glad I didn´t come over that video. Did they really say that this girl started with twitching and nothing else? Btw I think its really weird that a girl with *** wants to have her video out on you tube. But maybe that's just me...Im scared right now.

no she did not say it started with twitchingthis came from another videoBUT: all you read on the internet of ***-patients is very subjective. Only 6% show up with fascics first, on from what I know, weakness follows very fast after it. By the way you are a 25 year old girl. It mainly affects men.I think my symptoms here are more worse than anyone else here. I twitch 24/7, I twitch so much it hurts, my muscles hurts, I buzz, I find myself not walking that well anymore....I'm just a special case, you are not, you are fine!

For the people that show up with fascics first, the weakness is there, they just don't know it until they undergo the simple strength tests by their doctors/neuro.

Bart - Trust me! I also twitch 24/7 EVERYWHERE, face, calves, feets, hands, shoulders, back, arms, face - everywhere! And I have buzzing, pain and ALOT of anxiety. I hate this and every day it gets worse. My leg feels week and my trout feels weird, you name it - I got it! And I have not had an emg and been dx with bfs. But from what I´ve understand many people here have had the exact same thing but the have learned to live with it. I hope Im one of them that it is Bfs and anxiety I have. Some people here have really helped me and Im glad that they tell me that they have experienced the same things. And in your case Bart, you also have been dx with Bfs, and it really sucks but you are ok. You have done more examinations an the most people here have- and you are fine....be happy!

Thanks Swedishgirl, and you are fine too, trust me But indeed this BFS thing is so annoying, but we have to see it positive, their are people with real diseases, so we are lucky and just have to try to life with it (but nevertheless I would like it that I stopped twitching - is that too much to ask?? )

My best friends father died of ALS, she metionned that her father had twitches all over his body 24/7 very visible. (but the dx was already given by the time of the twitches - he had weakness/atrophy)