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Blizna

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Hi,
I havent posted on this forum for a few months..

24 yrs,I had twitching for more than 16 months without any other signs. I twitch everywhere, at average I got 10 twitches per hour, more after stretching/flexing those muscles..
EMG done after 4 months when twitching appeared.

I had been diagnosed with chlamydia pneumoniae infection (this one causes twitching often but many docs it even doesnt know).

Anyway, Im still not absolutely ALS-fear free..

So my question is silly, but you know...: Do you know about anyone who had only twitching for more than year without cramps or any other signs and later develops ALS?
Or what do you think about it?
Thanks!
 

wright

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Everything that I have read in my journal articles and everything that I have been told by neuro's, indicate that ALS twitching does not stop. Therefore, we're not talking about 60 twitches a day . . . or 60 twitches an hour . . . but 60 twitches a minute (give or take).

Is that not the typical way muscle twitches present with ALS? Please correct me if I'm wrong.

Blizna, to answer your question: I think any neuro would more than likely clear you and tell you that you have BFS.
 

chris_uk

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Wright

I have CONSTANT twitching in my calfs, at least 60 a minute non stop day / night, does this then therefore sound more like ALS than BFS?

Thanks

Chris
 

wright

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NO! BFS twitching and ALS twitching can present in the exact same way.

My point WAS NOT to compare BFS twitching to ALS twitching. It was more to alleviate the fears of those that come on here and say they twitch constantly . . . and find out that they have a few twitches an hour or a day . . . which is not how ALS twitches (again, as I understand it) occur.

This is where the internet doesn't give the full picture of things and is why people SHOULD NOT try to diagnose themselves . . . because for the most part . . . they are not even close to being qualified to do so. Just because someone can spell "google" and anything else one wishes to search on the interent . . . doesn't make anyone an expert or even informed for that matter.

When we teach our medical students and nursing students, we make it a point to tell them to stay off of the internet, because many sites do not have good information or correct information or complete information, etc.

There are so many things that go into the diagnosis of ALS and every other disease, that someone without the core scientitfic and medical knowledge and/or experience, can't even come close to other differential diagnoses. That is why so many on here have their blinders on and insist they have ALS and become so irrational that they can't think straight.

Take home message: Let your docs do their job, which means let them diagnose you AND believe them when they give you that diagnosis (or lack there of).

Certainly we welcome all to come here for advice and opinions and support because that's why we're here.
 

BethU

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Therefore, we're not talking about 60 twitches a day . . . or 60 twitches an hour . . . but 60 twitches a minute (give or take).

Hi, Wright ... That's probably the rate for me. The tongue fascics are much more frequent ... I'd say at least hundreds a minute. The whole surface of my tongue is constantly quivering with random tiny twitches, all happening at once.

The pattern in my left arm, which is the one doing the twitching, is: a twitch on the shoulder (the only one I can feel), then some on the bicep, then one the length of the forearm, then one next to that, then some on the back of my forearm. Then back to the shoulder, the bicep, etc. The pattern repeats endlessly.

I'd say each muscle easily gets in somewhere around 60 a minute. I have no idea if this is "typical" (is there any "typical"?) but it's how it's happening with me.

BethU
 
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rose

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OK, originally I avoided reading this thread because I'm growing increasingly irritated with the internet search engines steering so many people to ALS and scaring them half silly. After being active on this forum for a few months, its gotten to where if the thread subject line says something about twitching could this be als, I don't even want to skim it. Not because of the person that posted the question, but because there is nothing I can do to change the way search engines function and it frustrates the heck out of me.

Like BethU had written in another thread line, just because someone coughs, (hopefully) their thoughts don't turn first to lung cancer.

After reading this thread (this one here) I wanted to add some to what has been said.

If you follow the link provided by Al's sticky on EMG (the very first sticky at the top of this, the "Do I Have ALS" forum) There is some very good solid information in there.

First, the opening page of the Q&A on interpreting EMG findings, this information is provided: In a study in 1993, a total of 121 patients with benign fasciculations were followed up to 32 years, none developed ALS (Blexrud et al, in Ann Neurol 1993;34:622-625).

This (above quote) should be reassuring to Blizna and others.

But then, about how frequently one experiences fasciculations, that really varies from person to person. I am not diagnosed with MND. I have a diagnosis of bulbar palsy and probably MND. I started researching the fascis part of this type of disease when they started in my legs. My tongue has had them for several months, but for whatever reason, it just wasn't that much of interest to me. It mattered a whole lot more to me that I couldn't move food around well in my mouth anymore, and now have this dumb sounding lisp!

However, once my legs and feet started twitching I began to care more about understanding what a fasciculation is, and what they indicate. As my own fasciculations range from frequent ones in the same spot, to slow less frequent random ones in my legs, I found the following information. It is provided by the same "EMG sticky" link, on the second page of the EMG site:

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.


The latter fits me much better, although I've had the very fast fascis (and my very own YouTube video of them is part of the EMG sticky thread) for the most part, mine are more random, less often. There seems to always be a little something going on, but much of it I don't notice.

Again, my diagnosis is only "probable" MND. I had no twitching or any sort of fasciculations until after I began to have weakness. The first twitching that I noticed ever in my legs did not start until early this August, so its only been about 6 weeks of them. I really feel for the people that have the more violent ones all over their body, all of the time, and have doctors telling them that they needn't worry. However, there are a lot of other annoying problems we can develop in our body that are not life threatening either.

The main gist of my post is to urge people to read all of the pages in the link provided by the EMG sticky. There is a wealth of information in there!

take care, :)
 

wright

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I have to add something to what Rose just said. The global twitching that was discussed on the "EMG sticky" is ALS twitching when the disease has progressed. That wasn't made clear in the moderator's response. Global twitching can be seen with BFS too . . . so please do not panic if you have global twitching. It means nothing without weakness and atrophy. Did you hear me? NOTHING! Even if weakness and atrophy are present, it still doesn't mean you have ALS.

One other thing is that twitching can be caused by a gazillion different things, most of them . . . for whatever reason . . . not found when you search twitches on the internet. I've said this many times before: people can not and should not try to self-diagnose themselves, because they are simply not qualified to do so.

One last thing I must say, is that although that "sticky" is very helpful, there are some outdated things in it. I believe the questions and answers are from a dialogue that took place some time back in the 90's. It is pretty good for a general overview of what an EMG is, though.
 

CindyM

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Thanks Rose and Beth and Wright for these informed and rational responses.

Rose- I like your way of viewing this whole series of events. The Internet search engines are most likely steering frightened people here, causing them even more concern. Then, of course, since we get more "hits" from the search engines, this board rises to the top of the results page more efficiently, thus causing more hits. It is easy to blame the searcher but you, Rose, seem to have hit the nail on the head!

Keep up the good work, guys! I am sure people appreciate the reassurance. Thanks again, Cindy
 
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