worry about having als

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worry about having als

Postby Donald Duck on September 25th, 2003, 12:39 pm

hi to everybody,
glad to find this informative site, but still afraid of having "als".
my twitches started about 3 weeks ago in the left forefinger. 2 or 3 days later it went over to very different parts of my body (hands, shoulders, backside of head, eye lid, belly, legs & toes...).
my family doc and also the nero were telling my, that there is no reason to think about als. both having patients with als. so i should normally trust them.
but read on many internet pages that als started often with these twitches. als is therefore still in my head and i'm think about it the whole day.
only one guy told me that twitches all over the body with no other symptons rules out als. is that right ?
asked my neuro for an emg but he sees no reason in doing it.
what do you think ? is this the first sign for als ?
since y'day some muscels started to pain. what does it mean ?
many thks & rgds
michael
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Postby Rob247 on September 25th, 2003, 3:04 pm

Hello Mr. Duck

You sound like hundreds of folks that have passed through here over the past year. Your symptoms fit benign fasciculation syndrome (BFS) to a "T." Please don't worry about ALS. Many of us have spent weeks/months/years worrying...trust your Docs. They are absolutely correct in their dx. Twitches may last a while or forever...who knows. So you heard it here first...get on with your life. My neuro did not recommend an EMG either. However if you really, really, really need the reassurance have one done. It will be normal...trust me. Stick around, lots to learn here. Great site / great people. Waddle in anytime!

Bob
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Postby jcavan4125 on September 25th, 2003, 5:11 pm

Hi D.D.,
I agree that you having ALS is unlikely (approx. 1,500,000 to 1).
That is the incidence of people presenting with ALS with fasciculations only without weakness. Trust your Doctors, that's why you went to them in the first place. Don't you think if they thought there was even a remote chance that you might have something bad that they would err on the side of caution (not to mention covering their rear ends) and recommend further testing. The fact that they are not concerned should give you confidence that what you have is BFS and nothing else!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Donald Duck on September 26th, 2003, 8:13 am

many thks for your replies. it helps to feel a little bit better.
how probably is it that these symptons would turn into als ?
i'm always keep an eye on my different muscels. as soon as they react not normal i could cry. always thinking, als is now starting.
also the last nights only muscles in my right thigh are twitching. read that repeating twitches in one area could be a sign of als.
it is real horror. i've read in this forum a lot of messages that describes that there is no reason for als, and i've got only one single message that says in a german forum "yeah, it could be, 'cause...". is it normal that you think this one guy could be more right than the all others ?
sunny greetings from germany,
michael
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Postby Jenn311 on September 26th, 2003, 9:06 am

DD...

Repeat after me: "I do NOT have ALS". Keep saying that.
The twitch in one spot that you describe is called a "hot spot". They can twitch for hours, days, weeks, but are not an ominous sign. They are VERY common in BFS. You have nothing to worry about. Go out and enjoy life and TRY to stop worrying. We are here if you need us.

Macht spass
Jen
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Postby Donald Duck on October 1st, 2003, 10:43 pm

hi everybody,
i'm still feeling very bad.
according to one guy who has als, it started to 90% with such twitches i have. what do you think about it ? does he is right because he should know it ? my docs told me it is in my case a psychological problem. for years i'm
a hypochondriac. i have big problems to trust them especially if i read such messages from people who have als.
the guy further says that only in a hospital after several emg's docs can for sure tell you of you if you have als or not.
every single minute a think about it. only in the office if i have a lot of stress i feel better, there is not time to think
rgds
michael
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Postby Pole on October 2nd, 2003, 3:33 am

Hi DD

I think it's better to believe what neuro says and in results of medical researches than believe what somebody unknown says on internet. Internet can be a great source of info but also can be very missleading.

What I know from talking with several neuros and from reading many many many articles about ALS, the main hallmarks of ALS are weakness and progression. Fascics come usually after weakness and almost ever patients don't notice them by themselves.

regards
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Postby Floater on October 2nd, 2003, 7:28 pm

yes believe your doctors....they deal with this crap everyday
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Postby Donald Duck on October 10th, 2003, 3:58 am

thks for your positive replies. i felt much better for about 5 days.
didn't think about all this. had some twitching and vibrations the wohle time but was telling me myself that's nothing serious like you told me.
that worked fine... but suddenly it started again to twitch more and more.
something that makes me much more worry is a kind of a selftest.
after if i intentionally strain the whole arm (or leg etc) muscels for some seconds somewhere in that area it started to twitch.
what does it mean if a muscle starts to twitch seconds after its heavy use ?
has anybody made the same experience ?
i also take daily abt 240 g magnesium in pills for 2 weeks now which in my opinion makes no different.
thought i was on a slow way to come back into normal life but my mind took me back to this...
thks and best wishes
michael
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Postby Pole on October 10th, 2003, 5:01 am

Hi Michael

It's no use to do any selftests. If you're looking for hard enough you will always find something what would be not so perfect as you want it to be. I tell you that after months of selftesting :)

The second thing is your twitching after using muscle. I have exactly the same - I notive that after rapid move of hand (if I want to catch a fly for example) twitches occurs - ussually 3-4 rhythmic twitches. The same in legs after stretching. I think it's called contraction fasciculations and is nothing unussual in BFS.

And about magnesium. After 2 weeks there is always no results because magnessium riched to bodys's cell very slow. You must take it for at least 2 months to see positive effects.

regards
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Postby Donald Duck on October 16th, 2003, 11:29 am

hi pole,
the twitches after using muscles are coming more and more.
do you think that is a bad sign ? makes me again very nervous.
and have you ever heard that someone got als after having all our described symptons ?
regards
michael
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Postby garym on October 16th, 2003, 4:16 pm

My neuro told me not to worry about twitches after muscle use. He said those are pretty common and not necessarily indicative of anything bad.
Gary
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Postby Pole on October 17th, 2003, 2:18 am

Michael, you've got an answer for your first question from Gary.
Your second question is hard to ask, because I have to ask yes, BUT I heard also about MANY people whit exactly the same sympthoms which didn't end up as PALS.

regards
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Postby Donald Duck on November 12th, 2003, 5:25 am

hi guys,
for few days my muscles in the upper arm feeling very bad.
if i keep my arm in a particular position the muscles are feeling like they are overstrained. thought it came from playing to often pc-games with keyboard. but did not play for 3 days and the muscles are still tired.
is that the starting weakness als beginns with ?
i can do everthing with this arm as before. I've tried out to lift weights with both arms to figure out if there is a different. the left side starts earlier getting tired but can do all movements.
this sympton scared me completely. i know that i'm a hypochondriac but can't belive that my mind can do such things with me. there must be something serious.
what do you think ?
rgds
michael
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Postby Pole on November 12th, 2003, 7:36 am

No, Michael, that's not the way of als weakness begining. ALS weakness ussually begins as distal weakness (palm, fingers, foot). What you desribe is propably a fatigue what is common in BFS. What is this "particular position" of your arms in which you feel tiredness?

regards
M.
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