Post your questions about BFS here

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Postby GSC on October 11th, 2002, 3:30 pm

I now this is a constantly repeated story but here I go. I've been full body twitching for 3 years (9/99) know and I am wondering if the Doc's missed something or does ALS move at this speed. Soon after the twitching started I read for the first time that twitching was a symptom of ALS and well you know what my anxiety level did. My neurologists did all the physical, reflex and strength tests and they all came out normal but I still felt like I was getting weaker, dropping things, choking on saliva, etc. I then had an NCS & EMG study done (almost 3 years ago 1/00) and both came out normal. They said my problem was BFS and my anxiety was getting the best of me.
It took a lot of couching but my doc and wife, but they finally got me to start taking some Effexor to help with the anxiety, and it did, but I still twitched. No weakness or atrophy noticed by me or my neurologist. Sometimes I can't remember if I twitched at all that day and somedays I twitch all over all day. I guess you get use to it and just learn to live with it. But what most people that are "twitchers" will tell you is that there is always that little voice in the back of your head saying "they missed it, it's ALS!!..they tested you too soon!!"
I, like most "twitchers", still have that fear. I see my neurologist every 4-6 months and all was well (no signs of weakness or atrophy or reflex problems) as of my last visit back in Feb. or March of this year.
I guess what I am wanting to know is am I in the clear now as far as ALS being the cause of my twitching and it is really BFS? If I had ALS wouldn't I have a lot of signs of it after 3 years of twitching?
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Postby twitchchick on October 11th, 2002, 4:16 pm

Hey, I'm sorry for your problem, but it is comforting to know that there are other people out there with the same problem. I started twitching all over my body at age 23. Had all those tests also, EMG, MRI's, CT scans, xrays, bloodwork, etc. NOTHING! I probably twitch about 400 times daily. The only change in symptoms was about 2 years ago I have noticed weakness in my left arm. Also recently I've had a pins and needles feeling in my face and leg. I fear the worst every day. It consumes me. 7 years ago when the symptoms began I saw 2 neuros. One was at the University of Michigan. He said I had nothing to worry about and it was BFS. I just recently saw another neuro and he did an exam and another EMG. He didn't find anything wrong. I fear ALS every day and I fear that I will be that one statistic that they missed. I appreciate hearing your story. Thanks for sharing.

Postby Twitcher(nli) on October 11th, 2002, 5:12 pm

Both of you are FINE!!! I can't wait until I've been twitching for years and can relax a little more. (I'm at about 11 months) If you're still very nervous, get an EMG and then get on with life. Fact: by the time you notice the twitches in ALS, there is detectable damage that an EMG will pick up. The twitches are caused by the muscle tissue dying!
The length of time the two of you are talking about is SUPER reassuring. You'd have major weakness by now. Remember, ALS progresses. It does not get does not stay the same.


Postby guest on October 11th, 2002, 8:44 pm

dont be silly, you dont have als after 3 years of twitching.
you would be in a wheelchair at best after 3 yrs.
you should know by now, twitching in als is because of muscle death...
you would know after just months if you had als and the emg would have told you then if you had it.
fasciculations without weakness is always not als.
you just have stress. nothing more.
als weakness is very progressive. means it just gets worse. dead muscles do not heal....
when you get rid of this idea of als and get anxiety under controll you will twitch less often for sure.

good luck

Postby guest on October 12th, 2002, 3:37 pm

I know what you guys are saying but even now I still have that fear. I am a 35 yr. old male that has never had a problem with stress or anxiety in my life but when this twitching started things changed. Most people don't know or I think understand what it is like to live with that fear over your head for years on end.
Take the past two or three weeks, I noticed the muscles in my left forearm have had a dull ache and my wrist has seemed sore. I then start looking at my forearm and it looks smalled then the right one, I notice when I make a fist that there is a groove running under my watch band (in line with the ligaments in wrist) that is not in my left hand. Yes I am right handed and I know that your body is not symmetrical but still it makes me wonder. I don't mean to sound silly but why is it that I still have a hard time accepting BFS? It's like it's an educted way of saying "I don't know what you have".
Don't get me wrong, I am a man that has been thru some health problems in the past. I have a herniated disk in my neck (c5-c6) that makes my left arm, forearm, thumb and index finger go numb if I sit wrong or lay wrong. I have learned to live with that and the possability of surguery one day. The only time I think of it is when my fingers go numb.
Sorry I am rambling but I don't get a chance to vent to often.

Postby GSC on October 12th, 2002, 3:41 pm

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Postby twitcher(nli) on October 12th, 2002, 5:01 pm

GSC, I too have a groove/depression that runs along the ligaments in my wrist when I make a fist. I don't think anything on my body is symmetrical. My left arm is quite a bit smaller than my right. Conversely, my left calf is bigger than my right. And to make it even more weird, my right thigh is bigger than my left. Heck, my left nipple is lower than the right one. (tmi, I know) The point is, I've have been so obcessive about my body, I have the whole thing "mapped out." I know every little's an awful way to live. Even now, after I know I don't have ALS, I check myself in the mirror everyday.
I agree, accepting a diagnosis of BFS is hard. It's about the same as saying, "it's all in your head." You just have to remember that BFS is real and there are some ideas on what causes it. (irritated muscle membranes) Just like some people have a little more natural tremor in their hands(enhanced physiological tremor), some people twitch more(BFS). They just gave it a name. It's not made up, it's just something that most people would ignore. Hell, if it wasn't for the internet, how many of us would even worry about them? It seems like everyone here looked up muscle twitches and found ALS, which made the twitching much worse. Ok, so now I am the one who is babbling.
Oh yeah, I get stiff/sore muscles frequently. Today it is my right calf.

Postby Asterix on October 12th, 2002, 5:28 pm

Do you already know the Mayo BFS Study ?


This was the key finding of the important "Mayo Study" (considered the "gold standard" for BFS) published in 1994.
It was a long term (average: 7 years) follow up on 121 BFS patients.
Result: *NONE* of them developed ALS or any other motor neuron desease !

Another study investigated the progression of ALS patients who
presented with twitching as the only initial symptom (6.7 % of all ALS patients) In this group, the onset of serious symptoms (such as weakness)
occured on average after 7 months of twitching, with an maximum of 13.4
months. So, once again, it would be almost impossible to still develop ALS after years of twitching only.

(However, unfortunately, I have come accross quite a few case stories on the web where PALS stated that it took two or more years before the onset of any weakness. Such anectdotal stories however contradict the findings of the scientific studies above. So I assume that in these
said stories there had to be some other (unmentioned/unaware) sx than fascics or at least EMG abnormalities much earlier on
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Postby guest on October 12th, 2002, 6:01 pm

do you know at the clevealad clinic and the mayo clinic, the 2 best for als in the nation. the drs have seen no, none, NEVER, a case of fasciculations and a normal emg needle exam (normal except for fasciculations) that turned out to be als.NEVER.NEVER NOT EVEN ONE
the emg cant miss this so if someone had twitches months before als was dx. then they did not have a clean emg study.
so if you have stop worrying and if not, go get one so you can go back and LIVE.
TWITCHING IN ALS IS MUSCLE will not happen without weakness. how could it?

Postby GSC on October 12th, 2002, 6:56 pm

I am glad I found this site!! It's nice to type to people going thru the same thing and not feel stupid. It's one thing to talk to my friends and family and another to type to people that know exactly what I am going thru.
The funny thing is that is I was on the onther side of this thing before it happened to me I would have said "pull your self together and get a grip". But now, once I have been thru this, I realize how much harder it is to do that.
I guess I am over analyzing this thing. I haven't had any real worries about it until a few weeks ago. I mean I just went on with life and was a happy guy. I don't know why but it just creeped up and put that little voice back in my head. I do now that the more I think about it the worse it is.
Also, one thing I noticed was caffinee(?) made me twitch more so about 3 years ago after the first Dx. I cut out all soda's with caffinee and cut my coffee back to 1-2 cups of 1/2 caf a day (Iknow but I like my coffee in the mornings) and believe me I know if I drink to much coffee. I think that more "twitchers" need to know just how much caffinee affects it. Also, I take a calcium, magnesiam and zinc supplement too. I do take Effexor for the anxiety and I have to say it (according to my wife) really helped. It does have some side effects, one of which is really great if your a guy, but it is worth it.
Iguess I may just need a little reassurance now and then from people on the same side of the fence. I have a wonderful, supportive, loving, understanding wife and 3 great kids but sometimes... well you know.
So I take it you guys feel like I am just over analysing this thing?
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Postby Twitcher(nli) on October 12th, 2002, 7:01 pm

Yeah, we've all over analyzed it at some point. Take your family out for a picnic tomorrow and enjoy life.



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