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Blizna

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I have thought that widespread twitching is good sign and the less I twitch, the better.

Comment So according to your clinical experience: the random twitchers, those who get them few times a day only and every time in totally different location (a twitch in the calf muscle once every hour or less, for example)- these are the twitchers who should worry more about als? * More than the twitchers who have them continuously in the same muscle?

Answer Yes, this is true, it is good clinical assumption to follow, but it is not perfect, as surprisingly some patients with ALS are oblivious to their fasciculations



Exactly my case. I twitch in shoulders, thigs, hands, legs, face..but only a few twitches per hour. Now I really cannot understand why this is worse, I always thought denervation would start in one place and spread.

Anyway, Im back down with the anxiety, however its not as bad as it was last year. I know its stupid to vent it here, especially if most of you went through this..sorry
 
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Al

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First of all I thought you weren't going to drive yourself crazy any more. Second, who wrote this? Does he know what he is talking about? There is a lot of misinformation on the internet and even a lot of docs have trouble figuring if it is false.
AL.
 

Zaphoon

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I agree Al. I don't pay any attention to twitching anymore, myself. Its best to pay attention to what the neurologists are saying.

Now the cramping... thats another story. I only pay attention to that because it bugs the h.ll out of me:mrgreen:

Blizna, do your best to ignore the twitching. Listen to what the medical folks are telling you. You'll drive yourself nuts, otherwise.

Zaphoon
 

wright

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It seems the last three threads from you have had the goal of scaring the crap out of people on here, one of which had to be removed per your request because you realized your irrationality. Is that your goal by the way: to scare people on here needlessly?

As I'm sure you know . . . and I know you know because you have stated it yourself on here (but for whatever reason you have chosen to ignore your own words) . . . twitching with ALS typically starts focally and then moves from region to region.

I believe in the last post you had in another thread, these were my words to you and I will repeat them again (maybe this time you will listen):

Relax, Blizna.
 

Blizna

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Wright, I appretiate your words, but in the post that wasnt reffering to PALS - how PAL could have "benign" fasciculations?
There is simply written, that people with regular twitching in still the same places have most likely BFS..
But could you explain to me: how its possible that in the post its vice versa? Many sites declare that focal twitching is worse...
PS: Sorry, I dont want to scare anyone and you know it...afaik many unDX twitch a lot...and thats better from this point of view
 

wright

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He was saying that body-wide twitching is indicative of ALS but during more advanced stages. Furthermore, people with BFS can twitch focally or have widespread twitching.

It actually doesn't matter what he said, because he simply does EMG's and is not an authority on ALS or BFS.

How can there be so many different things written on the internet you ask? Because there is . . . SO MUCH CRAP ON THE INTERNET . . . that is why.

Would . . . You . . . Relax . . . Please!
 

broodjeaapspeciaal

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He was saying that body-wide twitching is indicative of ALS but during more advanced stages. Furthermore, people with BFS can twitch focally or have widespread twitching.

It actually doesn't matter what he said, because he simply does EMG's and is not an authority on ALS or BFS.

How can there be so many different things written on the internet you ask? Because there is . . . SO MUCH CRAP ON THE INTERNET . . . that is why.

Would . . . You . . . Relax . . . Please!

:lol: I guess so, its the anxiety that makes us twitchers believe those stories.

It seems like BFS is COMMON compared to ALS; just try to think that way.
 

Blizna

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Wright, maybe I dont understand you..but the whole question was about benign fasciculations and their pattern. The questioner stated that benign ones tend to be more frequent and constant in location...


PS: Wright, may I PM to you one abstract? I would love to hear your oppinion but dont want to make it public..thanks
 

wright

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FOR THE LAST TIME:

He doesn't know what he's talking about when it comes to twitches! His statements are too broad!

He is not an ALS specialist!

He simply does EMG's!

Send me whatever you'd like.
 

hopingforcure

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Ok, A twitch is a twitch is a twitch, they mean nothing if not fitting into the elcto-EMG, malignant pattern. Atrophy and weakness in the clinical exam are also absolutely required to have ALS, some people just twitch, if you have als it is my belief that you would know it. Weakness in als is not the kind that is perceived, it is real, and cannot be denied. I want those of you who are scared of ALS to remember that the PALS and CALS on this board are dealing with the reality of having this disease that you are all frightnened out of your mind that you have, step back and walk in our shoes, and once and a while think of the other side. I do not mean to be negativie just thought after reading the board for years, lately it seems so many people just come here to prove they do not have ALS, and then forget we exsist. I am not being nasty just want people to step back and think.................
 

broodjeaapspeciaal

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Ok, A twitch is a twitch is a twitch, they mean nothing if not fitting into the elcto-EMG, malignant pattern. Atrophy and weakness in the clinical exam are also absolutely required to have ALS, some people just twitch, if you have als it is my belief that you would know it. Weakness in als is not the kind that is perceived, it is real, and cannot be denied. I want those of you who are scared of ALS to remember that the PALS and CALS on this board are dealing with the reality of having this disease that you are all frightnened out of your mind that you have, step back and walk in our shoes, and once and a while think of the other side. I do not mean to be negativie just thought after reading the board for years, lately it seems so many people just come here to prove they do not have ALS, and then forget we exsist. I am not being nasty just want people to step back and think.................

I feel the pain, i really do. As i most likely got BFS ( the anxiety still catch up on me sometimes tho ) , i promised myself that whenever i have some spare money, i would donate it to the ALS foundation instead of wasting it on stupid stuff like computer games. I guess BFS can be positive in that sense; it makes people realise about the horrible diseases and stand still for a moment.
 

Blizna

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broodjeaapspeciaal: exactly, I totally agree! I changed myself a lot during this experience...I think now I have really different values than I used to have.
 

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Hopingforcure

Beautifully put and I hope your words don't fall on deaf ears.


Blizna

I read the abstract you sent to me. I read the actual study some time ago and I will share with you what it said. The reason I'm replying to you on here, is so everyone can read this that is losing sleep, weight, hair, etc. over twitching.

The study basically has the two following conclusions:

1) Clinical signs of ALS are preceded by EMG findings, which means that your EMG will be dirty before you realize you have lower motor neuron symptoms of ALS.

2) ALS is not diagnosed by fasciculations alone. What is also needed is evidence of widespread active denervation (PSW's and fibs) along with chronic reinnervation (large MUP's). Fasciculations alone mean nothing. Clinical signs of weakness and atrophy are also needed. Ironically, that is what hopingforcure more or less just said in her post.

You have had occasional twitches for over a year now without any weakness or atrophy, along with a clean EMG. What more do you want.
 

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You know I thought the twitching was bad and the pain in my neck and hip were enough to bring tears to my eyes but then the muscle cramps started and the weakness in my left leg. I could care less about twitches any more. I spent today LIVING. I focused on everyone BUT myself and that's what it's all about. So please, chill.
 
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