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Have you ever thought that way?

PostPosted: June 18th, 2003, 3:03 am
by Pole
Hi everyone,
I show you my point of view. I wonder what do you think about that?

I was told by neuros that fasciculations related to ALS is always a feeling of crawling worms under skin and it also looks like that. It happens because muscles are built from fascicles and when the muscle is denervated these fascicles are not conected with muscle and they move. That is why you can induce fasciculation by shaking the muscle. When you shake the muscle you can see that something like worms crawling under your skin.
In Polish fasciculations are called "trembling of muscle fascicles" and I think that is exactly what REAL fasciculations are. When the neuro examined me he was shaking many of my muscles and he told that I have NO fasciculations, because they do not disappear. When they are - they are always.

I think that all our fears are from missunderstanding what we all read on internet. I think that what we almost all feel are not REAL fasciculations. These are bizzare muscle movements unknown ethiology which could be conected with stress, anxiety and many other factors. And the most important think - what we feel in our muscles has NOTHING to do with ALS. That is why most of neuro are so calm when we visit them. These strange muscle movements (pulsation, shaking, buzzing, trembling and so on) are not even a sympthom of ALS. The sympthom is only REAL trembling of fascicles (fasciculations) what must be conected with weakness (because when you feel REAL fascics your muscle is already denervated and it must be weak). And almost always weakness is first or comes right after first fascics.
I also think that wildspread and random muscle movements rule out ALS. If it would be from ALS it would mean that all these muscle are (or starting to be) denervated. We would be really very very weak if it would be the truth.

So in my opinion all our fears are from missunderstanding.

But there is a second possibility and this is what I am afraid of the most now. What if all we feel (not REAL fascics related with ALS but these bizzare muscle movements) is the first sign that something is going wrong with our nervous system. And this wrong thing is ALS.
I mean that we are in very very first stadium (we don't weakness and we don't feel real fasciculations) so now we have NO ALS sympthom. But we all have bizzare sympthoms from our nervous system and who knows what will happen next (even in few years).

What do you think about it? First about what is real fasciculation RELATED to ALS. And second about the second possibility I have just told you.

Marcin

PostPosted: June 18th, 2003, 3:21 am
by tlotoxl
The Mayo study and the experience of the members here does not bear out the suggestion that BFS leads to anything else and if it did it would certainly not be called benign by neurologists.

PostPosted: June 18th, 2003, 4:28 am
by Pole
I don't mean BFS leads to ALS.
I wonder if what we all feel is REALLY what neuros call fasciculations. If it is not we should not call this BFS. Some of us have real fascics (it is showed on EMG) and these REAL fasciculations are called "bizzare" by neuros and are benign.

But I think that most of us has NO REAL fasciculations. And if these are not fasciculations, but it is some kind of sympthom from nervous system it may lead to something wrong in future.

But I hope it won't.
Marcin

PostPosted: June 18th, 2003, 6:26 am
by Jenn311
Marcin,

Have you read the Mayo study found here on this web site under "articles'? If not, you may want to go back and read that first...it states that BFS does not lead to ALS. We are in the same pool for getting that as someone who doesn't have ALS. Believe your neuros!
~jen

PostPosted: June 18th, 2003, 6:51 am
by Pole
Jenn
I know that. I really know.

My question is: do we have REAL fasciculations? When I say REAL I mean this kind of fasciculations which is characteristic for ALS.

In my opinion the answer is NO. ALS fasciculations mean always and only WORMS under skin. Our fascics are not worms so we have no fascics like PALS.

What do you think about that?
Don't tell me that fascics are all little contractions of muscle and so on (as it is written in FAQ section). Maybe it is not a mistake to call every muscle movements fasciculations, but I wonder if all types of "fasciculations" are characteristic for ALS. I don't think so.
I think that only WORMS could be a sign of ALS.

Maybe you should call me WORM ;)
Marcin

PostPosted: June 18th, 2003, 8:49 am
by alive
Yet another reassuring topic :( . I prefer to think my fasics are benign, I wish you would too and not go into such detail on how it still may be possible that we have a horrendous disease after all. I don't really see what the point is - at least your (Pole) arguments scare me.

PostPosted: June 18th, 2003, 11:37 am
by Arron
No, No, No Pole, you are dead wrong. BFS can have TRUE fasciculations as well as other movements that look and "feel" like fasciculations.

A real fasciculation WILL show up on an EMG, other twitches, bumps and thumps do not. MANY people with BFS have TRUE fasciculations AND other bumps and thumps as well, and vise-versa. It has been talked about on this site time and time again. Some people who had their EMG done showed true fasciculations and other showed nothing at all while the needle was sticking right in a spot that was twitching like mad.

Worms under the skin, is NOT the defination of a true fasciculation. Actuallym worms under the skin is more known as Myokymia, which is also benign.

Before ANYONE posts scary, unfounded "information" on here, please ask someone who has more experience in this (your doctor or a long time BFS'er) before posting and scaring the hell out of all of the newbies who on here that are trying to get over the fear of twitching. This thread will certainly cause more damage than good and we aren't here to scare anyone, we are here to share FACTUAL information, not scary, fictional analogies that are way out in left field.

As for BFS leading to any other condition down the road, there are people that have had BFS for decades (26 years is the longest I have seen so far that is documented) and (here I go again) NOT one single person has EVER come down with, or developed ANY worse symptoms other than the normal BFS symptoms we all have, and they certainly haven't contracted any NMD from BFS, EVER, so why start something that will do NO good at all, other than scare people. Please stop doing this kind of stuff. It is not helping anyone, what so ever, and it is TOTALLY unfounded and incorrect.

PostPosted: June 18th, 2003, 1:31 pm
by alive
Thanks Arron! Now I can look at my twitches again and smile! :D

PostPosted: June 18th, 2003, 5:52 pm
by Arron
yes Alive, you can :-) I just get SOOOO mad when people start posting crap that is totally unfounded and all it does is scare the hell out of people that are still trying to be convinced that BFS is BENIGN.

Why take steps backwards when we KNOW what steps we have already taken to get to this point, and we KNOW THE FACTS already? I just got a bit P'-off is all. I hate the scare tactics some people just love to post. That's the kind of crap that starts panic and tramplings in buildings on fire or at large gatherings... Panic, panic, panic!! Oh, that'll get you somewhere... yeah, right! Why make waves and scare people with totally unfounded rubbish like what ws posted in the beginning of this thread? That kind of crap does no one any good!

To everyone reading this; if you're going to post something, post something that is useful and has merit. Not something that is intended to scare the hell out of everyone who is just starting to calm down and come to terms that BFS is benign and it's OK to twitch. This whole site is about support and sharing experiences. Coming on here and posting unfounded information that BFS is a slow moving form of ALS and that worm like movements are ALS twitches and what we all have is just like ALS is completely unfounded and totally irresponsible to say the least!

PostPosted: June 19th, 2003, 10:43 pm
by Jenn311
Does anyone get the feeling Aaron is very protective of his flock?
:wink: Jen

Thank you Arron!!!!!!!!!!

PostPosted: June 20th, 2003, 8:56 pm
by 25
I hope this does not sound bad, but I am beginning to know which posts NOT to read!!
Sandy

PostPosted: June 21st, 2003, 6:02 pm
by DanielDK
.....

Wow, wow, woooooow. What is this? Let me get one thing straight - do we all agree that doctors, neuros etc. all know very litttle about BFS? They dodnt even know what causes BFS, how to cure it, how to diagnose it - it's a matter of excluding all other diseases. Basically - everybody knows very little about this disease.

Therefore, when "Pole" (aka. Marcin) suggests, that the fasciculation WE experience are not the same as in ALS, what's the big deal???!! ALS is the Nr. 1 fright and source to all concerns that people have in this forum! Let's face it- EVERYBODY, especially the newbies, are scared schidless of ALS!!!

All Pole is trying to say, before he was stamped as an exaggerator, provocator and dooms-day-man, that the twitches we have have got NOTHING to do with ALS, and therefore none of us have even one symptom of ALS! That we are all clear - that it's like being scared of having a head tumor when you left pinky finger hurts!

Basically, as I understood it, all Pole said was meant as a reassurance. He was told something by a doctor, he merely reffers it and ASKS A QUESTION (the question asked: Are our twitches not different from ALS-twitches?), - like any of us! Why the fuzz? It's not like he´s suggesting that BFS turns into ALS in time like another unnamed member?!

This is an open forum. People can say what they want, unless they are of course trying to sabotage everything. And since when did certain people in here come to believe, that what THEY know is definitely the objective truth about BFS, and therefore they hush and silence all other members with different suggestions? No one knows the first thing about BFS - Pole was just trying to tell us that this has got nothing to do with BFS!

Regards, Daniel

PostPosted: June 22nd, 2003, 1:09 pm
by tlotoxl
I agree that there's no point in censoring ourselves over-much here -- people are going to worry regardless, and a major point in having a forum is that people can get their fears in the open so that they can be addressed.

That said, Pole's first post suggested that people here with BFS might not have real fasciculations whereas people who are developing ALS do. While some people here may not have 'real' fasciculations, the suggestion that 'real' fasciculations are indicative of an ALS diagnosis is entirely contrary to what I've read and what my own neuro told me -- when I got my EMG, he detected some fasciculations but was not concerned by them because my nerves were healthy. Likewise, I don't think the Mayo study would have used the term 'fasciculations' if it was not referring to 'real' fasciculations.

PostPosted: June 23rd, 2003, 3:23 am
by Pole
Daniel,
thank you. You understood me very well. I wanted to say, that in my opinion (because neuros told me that) most of what we call "fasciculations" is not a sign of ALS. I did not mean that "worms under skin" always mean ALS - worms also could be benign.
All I wanted to say: I was told that if you have ALS your fasciculations are always like "worms under skin". All other muscle twiches, cramps etc have nothing to do with ALS.

Arron, I don't know why do you think that I wanted to scary somebody. If this forum has to help people we should talk not only about nice things. If people perceive that you reject questions and problems only because these problems are incovenient for BFSers, they will not trust you anymore.

Regards
Marcin

PostPosted: June 23rd, 2003, 2:47 pm
by Arron
No, I think what "I" understood by Pole's post was that "anyone with real fasiculations (which were described by worms under the skin movements) are a sign of ALS. That is why I said what I said. Maybe I misunderstood the post? I don't know...

Yes, I do try to protect my flock. I am very protective and I get mad when someone starts spewing misinformation that gets everyone all in a panic again, (not saying that Pole was actually "spewing" misinformation himself, but that's how I first perceived it).

Maybe Pole's post wasn't meant to be misinformation and I just misunderstood what he was trying to get across? I don't really know what he was trying to get across other than "his was told that worm like movements are "real" fasciculations and they are a sign of ALS"... I could just see the panic starting in the reader's minds and thought to myself... "here we go again... I'd better start calming people down right now before this gets out of hand..."

sorry if I misunderstood the original post :oops: