age?

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Postby jblack on December 3rd, 2002, 3:08 pm

Just to clarify, that was my point as well. In other words, it's very unlikely that there is anything major we need to worry about.
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Postby luke91 on December 3rd, 2002, 3:35 pm

I'm 21 and have been twitching for only 1 month. I'm still waiting to be officially diagnosed with BFS.

Arron, you have a very inspiring, level-headded view of our condition. It really is very small when compaired to the more serious illnesses. It is my opinion that most of us came to this message board when we weren't sure what we had. We came here looking for information and reassurance, and probably NOT for a place to feel sorry for ourselves.

Most of the long-time BFS sufferers who still post on this board probably only do so to help new-comers, like myself, in finding relaible information and support.

BFS is really not a serious neurological disorder, and it's my opinion that almost all of us would agree with that. What's really disturbing and scary is not knowing what you have, and still having the courage to learn as much as possible about it.

Every hour of the day, I hope that BFS is all I have. The possibility that my condition might be something more serious is very real and frightening to me. Places like this message board are very helpful to me. So far BFS (if that's what it is) hasn't slowed me down at all. The fear and anxiety do that.

I (and probably most of us?) am only here to deal with the fear and anxiety of not knowing. I can deal with the BFS on my own.

I have great respect for all of you, especially the ones who stay on this board to help people like me. Thanks

--luke
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wow!

Postby jblack on December 3rd, 2002, 3:54 pm

Luke, are you really only 21? You're an excellent writer. You expressed everything I would have liked to say to this site's members in a single post. Thank you, and good luck!

(p.s. I'm in a similar boat...2 months in and headed to the Neuro next week. This site has really helped me stay positive and I hope I can help others too!)
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Postby Arron on December 4th, 2002, 12:08 pm

Yes, the both of you are right and that was my point.

There is real fear in wondering if you have something really serious, such as ALS, because what is printed and said about "twitches" LEADS us to believe that ALS is very possible, although that just isn't true and is quite the opposite.

What I was trying to get across is for people that have had twitches for some time, have had EMG's or numerous doctor visits to quit obsessing and if the twitches are comprimising your quality of life, (as one or more poster's have said), then get out there and get some help! Twitches are NOTHING to worry about if you have no weakness or once you have had a clean EMG! NO ONE, that number is zip, nada, zilch in ANY study with BFS has EVER contracted ALS and twitches do NOT "cause" ALS.

Some of the people on here have real fears and some of us have been in their shoes and can say that it sucks... we KNOW all too well how bad it sucks and how it can alter your life, but some of these people just keep obsession, over and over again, like a dog gone broken revord player and they NEED HELP! I just wanted to point out that if anyone is altering their life because of some lame little benign twitches, they need some serious help and it IS available out there.

It isn;t any different than a drunk not admitting he has a problem and needs to seek help. Obsessive twitcher's are EXACTLY the same. They will deny, deny, deny that they need help, (real help, like a psych. or a mental specialist) and when you stand back and look at the whole picture from a different angle, it all seems silly to be freaked-out over a little twitch here and there when there are SO many nasty things out there and people living better lives with WAY worse things.

I just want to take the "tough love" approach from now on because a few people really need to be smacked back into reality because they are lost in another world that they just can't get out of. I really feel sorry for those people because I was once one of them. Help IS available and if no one can point these people in the right direction, I certainly will and they can e-mail me anytime with the private message feature on this web site. I will be glad to help.
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Postby Guest on December 5th, 2002, 5:38 pm

To quote a line from the movie The Shawshank Redemption " Get busy living or get busy dieing".
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shawshank

Postby jblack on December 5th, 2002, 5:45 pm

my second-favorite movie ever. Just hearing that line quoted makes me well up! I love it, I'm such a softie!
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Postby tlotoxl on December 5th, 2002, 10:10 pm

sorry to go OT, but your last post kinda begs the question...what's your favourite movie ever, then?
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i'm a sucker

Postby jblack on December 6th, 2002, 12:51 am

It's a Wonderful Life. That top 2 probably says all you need to know about me. I'll cry at anything ;-)
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In response to Arron's last post above....

Postby Guest on December 6th, 2002, 8:17 pm

In reponse to Arron's last post above...
Hi... My name is Liz and I am an obsessive twitcher. I have been clean (i.e. worry free) for 30 whole seconds now. I was about on my first step ( admitting I have a problem) but then fell off the wagon, and couldn't decide if my problem was obsessive worrying or denial of ALS progression. So, I came back for more support! :D
Just kidding. Arron really is right on this, and part of me knows he is, and than I keep thinking "what if he is wrong?" That "what if" is driving me nuts! I know this sounds stupid, but even though I can joke about it... I truly think I need help. I can't stop obsessing, every little twitch,vibration, etc. drives me crazy. I can only think of what could happen. I saw a movie before the twitches started last year sometime, on the lifetime movie network, it was about a lady with twitches in her finger that ended up being ALS, and she ended up going to DR. Kavorkian so her son wouldn't see her suffer. I don't remember anything about it other than that because at the time I didn't have a son or twitches so it didn't really affect me, but now all I can remember is twitches leading to ALS leading to leaving her son motherless! I have got to quit watching medical television. It can really destroy you. I know in my head that alot of the movies are not based on fact but on public thought (twitches lead to ALS) but it still sticks with me, and when I am twitching in the middle of the night when I begin to twitch that is what I think about. Does anyone else relate? Sorry for unloading here.
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Postby Arron on December 7th, 2002, 11:33 am

Liz, hang in there girl, you're right, TV can add false or misleading scenario's when they portray someone or something.

My wife of 17 years has battled a bad case of Lupus (SLE, the nasty kind) since she was 13 and has had all kinds of surgeries, treatments and more medications than I care to remember and one night on TV, we saw a show where a medical teacher at a college made her students diagnose her. It was Lupus and the students were all crying because she was going to die and that Lupus was such a deadly disease... gee that's funny, it has a 97% "normal life" survival rate. That is hardly "deadly", although my wife's disease has almost proved dealdly several times, but she has a more rare case that is usually more severe than most other's. Even so, she is still here, could model in a magazine if she wanted, she looks great and it as active as she ever was. With that, take what you saw with a grain of salt.

The fact of the matter is, sometimes people with real ALS do only notice the twitches first. Just like you hear about some people in war notice blood dripping before they realize they have a 3" hole through their body froma .50 cal. machine gun. It certainly doesn't mean there aren't other symptoms involved. So if yopu have twitches related to ALS, there most certainly WILl be other symptoms that CAN be seen on an EMG or in a clinical exam, just as by seeing blood dripping from your body, there has to be a hole or a cut somewhere!

This is what jblack said in another post somewhere and it rings so true and I have said this very same thing over and ovr again, "It seems pretty clear that the appearance and sensation of the twitch wouldn't tell a doctor much. It's not about that -- it's about whether the muscles are dying and the part of your body getting weaker. That's not happening, so you don't have ALS. It's that simple."

So, maybe that lady did actually notice a twitch first, but that doesn't mean she didn;t have other things going on as well. If you have seen a doctor or had an EMG, and everything checked-out OK, then you have ABSOLUTELY nothing to worry about.

This same thing I just spoke about rings true for that lame , so called "6.7% study" where 6.7% of the people with ALS had "twitches only onset". That is about as outlandish and as full of sh*t as you can get! Not one of these "twitch only" people had EMG's done, so what does twitch only actually mean if they weren't checked for "other" symptoms. Twitching from ALS is caused by one thing and one thing ONLKY, dying muscle tissue and dying nerve endings, PERIOD. And because of this HARD FACT, it is totally impossible to have twitches with undetectable EMG findings.

Liz, hang in there and try to stay away from TV shows like that. I too do the exact same thing as you. I made the mistake of reading a TIME magazine one time in a dentist's office and in it was an article of a guy who was almost totally consumed with ALS and he only noticed a twitch at first too... well, with BFS time and medical exams are on our side, because if it is benign, all they will find is twitches and twitches only, which can NOT and will NOT EVER lead to ALS becauee they are two, entirely different things and have NOTHING to do with each other.

By associating twiotches with ALS is like associating fevers with Ebola or Scarlet Fever or Malaria, or stomach aches with E-coli or Diverticulitus or Chrones Disease. There are SO many other benign things that cause a fever or stomach ache that are so not fatal, so when a fever or stomach ache comes-on, should you start freaking out that it is something major. I mean, hell, they have the same starting symptoms don't they?

ALS is more rare than 95+% of the fatal diseases out there. So should you continue worrying about little twitches or should you worry the next time you have a fever or a stomach ache? We need to keep things in reality and in perspective. Twitching is not bad. ALL people twitch from time to time... we just twitch a little more than other's... and so what? Don't make a big deal out of nothing. We all need to get on with our lives!!!!!!!!!!
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Postby SoJerseyMom on December 7th, 2002, 7:56 pm

Brian_B, I'm 47, have been twitching about 18 months. (I also try to avoid medical TV shows.)
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Age

Postby Jeff on December 13th, 2002, 11:22 am

28 and been twitching for 8 months.

If my math is correct so far 15 responses, average age of 30.
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