Two important questions

Information about how to manage or reduce the severity of BFS symptoms

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Two important questions

Postby Pole on June 12th, 2003, 1:57 am

Hi, I live in Poland (apologize for spelling mistakes) and I have had fasciculations for 2,5 months. It starded in calves and after few days apeared in almost all parts of my body (thighs, feet, hands, chest, back and sometimes also face - but still the most of them is in calves). Of course I checked my sympthoms on the internet and I found ALS - the nightmare started.
I visited 4 neuros - they looked at my muscles, checked reflexes and strength. All of them told me that everything is OK and is no reason to doubt. Nobody told me about BFS - I think in Poland BFS is not known very well.
Since I found this website I hope that I have BFS but I still am afraid of ALS (I am sure that you know that feeling).

I have to questions for you.
First is about what really is fasciculation related with ALS? I have two kinds of muscle movement. In calves I feel and see gentle movements - it looks like very small spot of muscle twiches (once or more). In other parts of my body movements are rather like pulsation (strongest but not strong enough to move my limbs). Sometimes in other parts of my body I also feel single gentle twiches.
The doctors I visited told me that fasciculation related with ALS looks like worms under skin and you also feel like something creeping under your skin. They told me that pulsation of muscles is not characteristic for ALS. Tese "worms" apears because the muscle is denervated and fascicles (the muscles are built from fascicles) are "started to live their own life". And it is always conected with weakness.
I wonder if other kinds of fasciculations (not worms) could be the first sign that something wrong is going on nervous system (for example ALS is developing). If yes, maybe this first phase may proceed without weakness???????

And my second question is about EMG (which I had of course :)
The examination was described by the neuro who did it as "all examined muscle was in norm (I mean there is nothing wrong)". But I found in detailed description that in one muscle (4 were examined) they found two fibrillations - it was described as "a limit of norm" (of course I know that fibrillations means denervation and it is not good). I asked the neuro who did my exam about it and he told me that single (1,2 or even 5) fibrillations in muscle is nothing what I shoul worry about. He told me that may be a reaction of the muscle for a needle. It also can be from technical problems and sometimes single fibrillations apeares in tired muscle. He also told me that if the muscle were denervated there would be much more fibs and fibs would not end after two of them. And if the fibs were from ALS also other parameters in this muscle would be wrong (and everything else - conduction and so on was OK)
Despite of what he told me I was afraid so I visit next two neuros and showed them the EMG result. They told me exactly the same what the doctor who did my exam. They assured me that I have no ALS (for 99,9% - nothing is 100% sure in medicine).

I wonder what do you think about this fibrillations? Is here anybody who also had single fibs in EMG and was told that is nothing to worry about?
I think that if my fibs would be the sign of ALS it would be a bad sign for many of people on this forum - I have no other symptoms (sometimes fatigue, but I'm sure that is not weakness, no speak or swallow problems, and 4 clean neuro examination).
But if the truth is that no weakness and clean neuro examination means NO ALS and isolated fasciculations are ALWAYS bening tha also must be the truth that single fibrillations during EMG could be normal.

What do you think?
Sorry if my post is too long :)

Marcin
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Postby Jenn311 on June 12th, 2003, 6:27 am

Hey Marcin...

If FOUR neuro tell you that you have nothing to worry about, stop obsessing and believe them. You have BFS, nothing more. If they didn't use that term, as many people in this forum's doctors did not, that is still what it is. You need te find a way to deal with your anxiety, which I am sure is more bothersome at this point than the twitches.

In BFS, there is no typical twitch. We have all kinds, all over, from one time in one spot to a repeat symphony in our muscles that can last weeks to months...And yes there are many other odd neurological symptoms that go along with the twitching. Just spend some time reading through the old posts and you'll see what I mean.

And yes it is normal to have fasiculations that show up on the EMG....it's not really how many, but rather how they look that determines if they are the kind that indicate a potential problem. As Aaron, self-proscribed god of BFS and all around helpful guy (I'm still cracking up over that post!) once said, It is possible to have a fasic show up on an EMG as a sharp wave (the kind of thing you see with ALS) and not mean ALS. I hope that helps. Talk to Kerri...she was freaking out about a fasic that showed up on her EMG and subsequently went to three other Neurologists for their opinions and more EMGs (ouch!...I hate needles!). But after she started to accept that she had only BFS and nothing more she has become much more sane.

Everyone here is very helpful. We KNOW what it is like to be freaking out when you first start twitching. So stay posted on this site! Glad to have you here.
~jen
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fibrillation vs fasciculation

Postby KERRI on June 12th, 2003, 7:13 am

Pole,
Are you using the proper terminology, is it a fibrillation that showed or a fasciculation. If a fasciculation, then no need to worry, they are common in normal people as well, the one that showed up on my test was occasional and would not have been picked up if the doc was not looking for it, it only occurred once every 3-4 minutes if that, and rarely happens in that area anymore.

The neurologist said this is normal, and that fascics do not mean anything unless they are occumpanied by things such as weakness, atrophy and reflex change. If fascics come and go in different body parts and hop around then it is BFS, especially if there is no weakness.

Fibrillations are not normally seen, that is in normal individuals, but one fibrillation may have been an error, that sounds like a fluke, especially if your docs think so, trust them, all four guys cannot be fruit loops. I have gone to three neurologist and all of them have great reputations, one from mt sinai in nyc. I told myself you must stop this foolishness, and I tell myself this every day. We are not doctors so why are we playing doctors.

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Postby DanielDK on June 12th, 2003, 7:26 am

Hi Pole! Or - Dzien Dobre!

Yes - 4 neuro-visits and a clean EMG means NO ALS!!!! So dont you even worry the least about it!!! You are healthy and fine!!!!!

By the way - Interesting to hear that you live in Warsaw! I have a girlfriend in Warsaw that I' ve been with for 2 years, and she' s coming to Denmark to live with me in a few months! Beautiful city - and congratulations on your EU-membership! Speaking of Poland....I once went to the Medicover-centre in Mokotov, and visited an english-speaking neurologist. - Probably the only one in Warsaw :) - She examined me thoroughly, and then told me "Very dangerous - you need to be put in hospital for 6 weeks for FULL diagnosis"...Of course, I was psyched, so I thought what the hell, and asked her"So honestly, It doesnt look good for me"....Her reply: "No, I doesn't look good. I' m sorry. "....... That pretty much fuc... up the love-vacation I was supposed to spend with my wonderfull girlfriend. But you know - here I am today, better than ever! This thing we all have is NOT DANGEROUS!!! It's cool to have muscles twitches - at least that's what my girlfriend says when she notices one!!


Best wishes,

Daniel
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Neurologist

Postby KERRI on June 12th, 2003, 7:47 am

Wow Daniel sounds like you went through a real scare, did they do emgs and neuro exams before they came to this conclusion, how long have you been twitching, sounds like your neurologist there was a quack.

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Postby DanielDK on June 12th, 2003, 6:13 pm

Hi Kerri!

Yes, I did go through the big scare that time in Warsaw. No, she was a rather young (In here 30' ies) neurologist, and she didn't run any specified tests on me. She only did the basic neurological check-up on me, the one that most of us can probably do with our eyes closed, half asleep. That means checking all the reflexes, Babinski's, balance, Muscle-strength - all the usual things. ANd THAT*S when she told me that things certainly did not look good. To give such a message to a 17 year old happy-about-life-boy is not very reassuring or pedagogical, but what the hell, I asked her directly....Well.....I' ve been twitching for about 7 months now, and I' ve had 1 EMG only. + the usual check-up done by a total of 4 neuro's. i' ve never had a scan though. First of all, my doctors see no reason for this, and if you wanna do it the private way in a private hospital, it' ll cost you a lifetime. SO I 'll just live on. With Twitches. With a strange feeling of worriedness inside my head. But I' m happy. I' ve got everything and everyone I' ve always wanted. So I 'll make it - and so will all of you guys out there! Thanks for asking though, Kerri!

Cheers,

Daniel
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Postby Jenn311 on June 12th, 2003, 7:51 pm

Hey Daniel...

You certainly seem very happy-go-lucky! If I could bottle that and sell it I would make a billion dollars! You are an inspiration :D
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Postby Arron on June 12th, 2003, 11:56 pm

Daniel, you went to 4 neuro's and one in lady in Poland said "it doesn't look good"? Maybe she's a quack or a pecimest or something, or simply isn't as educated as the other three neuro's who said they didn't even feel a scan was needed. Some people just have strange reflexes and strange neuro exams but are still "disease" free. I'd find another neuro, or talk with one of your previous doctors and tell them what she said about you being in "danger"... some doctors are just wacky and clueless.
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Postby Pole on June 13th, 2003, 3:37 am

Thanks for answers.
Kerri, I use good term: fibrillations NOT fasciculations apeared during my EMG. There were 2 fibs in one of examined muscle. Three other muscles were clean.
I was told (by 3 neuros) that single (1,2,3) fibrillations may apear sometimes and if it would be conected with ALS, there would be much more fibs and other parameters of muscle would be wrong. My EMG was sumed as "clean and normal" despite of this 2 fibrillation.

And what about fasciculations? Does any doctor told you, that fasciculations related to ALS are always "worms under skin" and everything else has nothing to do with ALS????

Daniel, I hope we soon meet in EU :) Thanks
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hi pole

Postby KERRI on June 13th, 2003, 7:49 am

Pole,
There is no real way to differentiate between ALS fascics and BFS fascic, not just by looking at the fascic anyway, it is the company that the fascic keeps, sharp waves, fibrillations etc, so if you have all that in combination, with weakness then they look seriously at the fascic being malignant. The general population fasciculates as well so one localized fasciculation is normal, from what I was told anyway.

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hi pole

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