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fredrik

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Anyone,

is fasics felt or seen, or maybe both?
are they random?
Various between, twitching, buzzing, visible, non visible, for seconds sometimes, for days sometimes?

A lot of questions, but i read a lot of BFS as well and i wonder if the twitches/fasics/buzzing etc is diffrent between ALS and BFS?
Think it could help a lot of worried people who don't have clinical weakness and/or atrophy but twitches and other strange symptoms, like myself.

Fredrik
 

Al

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I could see mine before feeling them. Once they started they never stopped. Until the muscle atrophied. I have no idea what you mean by buzzing. Never had anything like that.

AL.
 

fredrik

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Al,

it's probably my pour english, i mean like thousands of small needes in hands or feet, mostly less than half an hour.
or somtimes more mild but even more local, a small spot in for example a knee, could go on from one hour up to a couple of days.
both of those is not visible, not for me.

Fredrik
 

Al

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I'd guess that that is not a sign of ALS.

AL.
 

BethU

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Fredrik, it's my impression that BFS twitches are much stronger and more annoying than ALS. I rarely feel my twitches, and find them very soft and subtle. Usually I have to stare at a spot to see them.

I think maybe the reason BFS is so frightening to people is because the twitches are so obvious and intense, which is not at all like ALS.
 

Jennifer51

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It just goes to show, that this THING is so random. My twitches range from hardly noticeable...I notice more when I lie in bed and am quiet to downright HUGE ones that can be seen even thru clothing. As to buzzing...I get that...mostly noticeable again when still and in bed...it is like there is a very low electric current attached to me and goes thru my whole body. The twitches can suddenly appear (huge or minute) in any part of my body in places that you dont even think have muscles
 

ktmj

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Like everything else we are all different. I've said before I've been a BFS'er for 20 years. Most were felt, some were seen. It's only been the last few months that I've had the more worrisome symptoms that are yet undiagnosed.

Some of my twitches are tiny and unseen. For several weeks my chest and shoulder muscles twitch hard enough to move my upper arm and people notice. While that is aggravating, it is the least of my concerns.
 

fredrik

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ktmj,

my worries is not my twitching.
for 1 year i've been very slowly weaker and my muscles smaller and when i train i don't get stronger, only strange ache.
my twitching started just 2-3 month ago and is all over and because they came that long after my muscles symptoms i think it's not a good sign.
If i had only twithing i probably wouldn't worry at all. i haven't read anyone or anywhere that only twiching is a symptom of ALS.
About diagnose, i leave it to my neuros, i don't think it's ALS.
But this forum helps a lot to get some more information a long the way.

and hopefully i can be to help to anyone in the future.
i've get the picture that many of the ALS worried people only have twitching. if there is a diffrence between ALS and other fasics/twitching etc then i think it would be very beneficial to have that written down in detail. Maybe that could save some worries and some neuro visits...

Jennifer, do you have a diagnose?

Thank you all!

And i feel for all you with bad diagnose!

Fredrik
 

rose

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Fredrik,

I agree that it would be helpful to have classifications for muscle twitches, maybe sometime in the future this will happen.

The inability to build muscle, and the aching is known to happen with ALS, but you've got the right attitude in thinking it is not this, and a willingness to listen to your neuro, which is good too. Make them prove to you that you do have it, rather than that you don't have it, and you'll be much happier of a person.

Good luck to you.

... oh, my twitching is similar to what Jennifer described. Most of it I don't notice or feel, but that is not to say all is like that. A few are quite active with lots of movement, but they're in the minority. The other night my left calf muscle did this "wave" thing where the whole muscle went back and forth with almost a violence. It was quite unsettling, and I'm glad its only happened once.
 

fredrik

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Rose,

i need to fill in, i didn't always have this attitude, first 3-6 month when the tension and slight weakness started i was very stressed out. i went to 3 diffrent neuros including one als specialist. They pretty much ruled out everything else but also didn't find any clear signs of als. well, that was before musclewaste and twitching so i guess things have changed but i have no rush to more follow ups.
I know some of the neuromuscular deseases is hard to diagnose so i still have two diffrent neuoros from diffrent hospitals. i just let them do there work and as long they have the same opinion most likely they are right.
After reading a lot about ALS and understanding how cruel that desease is and how fast it usually progresses i think if i'm effected it would probably be pretty obvious in not to long even to myself without running to the doctor every month. Also, reading about the none impressive results of riluzole (is that the name of the medicine?) it's really no rush for me to find out.
right now the only true disability i have is writing with pencil, and you know what? it's 2009, who needs a pencil these days anyway...

I hope all of you have as good day as possible today!
Tomorow? we probably know in 24 hours...

Fredrik
 

Blizna

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Fredrik, ALS is usually not hard to diagnose, but to confirm and exlude other diseases. The reason why some PALS got diagnosis after 1 year is not because doctors didnt know (usually they suspect it from first or second visit, if those are ALS specialists), but because they need to see the progression and do a lot of tests in order to be absolutely sure.
With this slow progression it could be MMN or another neuropathies, I would say it fits to your condition. EMG would show it.
 

Jennifer51

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frederik I WAS DX WITH PSEUDO BULBAR MID APRIL 08...SYMPTOMS STARTED ONE YEAR AGO
 
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