Real BFS or not ?

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Real BFS or not ?

Postby Pole on November 7th, 2003, 6:35 am

Hi everyone!

I would like to know how many of us really suffer from BFS and how many just twitch from time to time (take a look at my post in "panic" theme)

I think that if somebody twitches 10 times a day or even 20 times a day and not every day (for example one day with 10 twitches, after that 3 days without twitching and again a day with 10 twitches) it's not BFS. It's normal - maybe these days with twitching too much coffeine or stress? Just it.

BFS is twitching much more than "a norm". Everyday, hundreds times, all over body.

How many of you is a real BFSer and how many just twitch from time to time?
I ask because I just talk with a neuro (via net, I met this neuro on polish medical website) and she told me that she has never seen anybody with BFS !!!! Maybe because she was never a "first contact neuro" - she is working in a specialistic hospital from the begining.


I wonder if BFS is really so common condition?????

regards
Marcin
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Postby SusanSid on November 7th, 2003, 11:40 am

Marcin,
There are neuros who perhaps have seen fasiculations, but never diagnosed it as BFS, just something benign...usually after a workup that's negative. There are docs I have seen that do know what BFS is and feel it's not that uncommon.
If you asked every doctor if they've seen someone with whooping cough (pertussis), most would say no. However, many pediatricians would be up on that as they see more patients with it (despite immunizations). My point is, that in the medical field, doctors can become very specialized. If you have a neuromuscular doctor, they will see BFS patients hands down over a general neuro. Just because a doctor isn't familiar with a condition doesn't mean it doesn't exist.
As far as my twitching. I have it all day. Sometimes a big one that could be any part of my body, but I have them all the time in the calves and arches of my feet. I usually notice them to some degree, but don't when I'm moving around. It's when I sit and am quiet that I notice the twitches and can see them if I care to stare at my legs and feet. I try and not do that, as what's the point?
Just because the doc you met online has never heard of BFS doesn't mean it doesn't exist. However, it'll be interesting to see what people say about their symptoms.
Take care,
Sue
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Postby garym on November 7th, 2003, 11:46 am

Marcin,

I twitch continuosly. At any time during the day, I can feel/see twitching some where in my body ( mainly legs).

As for as how common BFS is, my neuro says he sees about 20-25 people a year with it. He is a nerve and muscle specialist and a professor at the Baylor University Medical School and is part of a group of specialist that are well known in the world of ALS. He too is not a "first contact neuro" and only sees people that normal neuros refer to him with potentially major diseases. He tells me that BFS is very common and very real.

I can't explain why the polish neuro told you that she had never seen BFS. It doesn't make sense that it is widely recongnized in the U.S. Maybe it says something about our culture (some much stress), or the fact that we seem to be over informed. Maybe people from other cultures just don't worry about twitching, and maybe they aren't as quick to search "twitching" on the internet. I know that I'm generalizing, but I wish we in the U.S. could just relax a little more. Every thing here is so up tight and stressful.

As you can see, today is my day for long and wordy posts. I apologize.
Gary
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Hey Guys

Postby KERRI on November 7th, 2003, 11:55 am

Pole never posts garbage, he was maybe not clear with what he is saying here. He told me that the neuro has never seen cases of BFS, not that she does not know what they are, just that she is the doctor in the loop that gets the real stuff, like ALS. The BFS cases never make it to her because they are diagnosed as benign before they ever get the chance to make it to her.

Pole, if I am incorrect please correct me.


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Postby Pole on November 12th, 2003, 4:19 am

Kerri, you are correct :)

Gary,
Polish culture is not so diffrent from US culture, believe me. We have also a stresfull life. I guess you don't know a lot about Poland, but if you know something about other European countries like England, France or Germany I can assure you that we are the same :wink:
The neuro which I talked to via internet is working in Germany now (from 1999) and in Germany she also didn't see any case of BFS. I think it's really because she works in a hospital and she sees only patients who are hospitalized (serious cases).

You are right, in Poland so far only 30% of people use internet (but this number is still growing). That may be a reason why not every twitcher is going mad about ALS and visiting neuro. But from the other side BFS is more common in young people and in young population there is much more than 30% of internet users in Poland.

And the last reason - Poles really don't like to visit doctors. Ussually we do it if something is really serious (not just silly twitches).

But it doesn't mean that Polish neuros don't know what BFS is. I saw 4 of them and all told me that in their opinion my fasciculations were benign and something like that was happening sometimes. They didn't use a term BFS, but what they said meant exactly the same.

regards
Marcin
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Postby garym on November 12th, 2003, 12:25 pm

Marcin,

I haven't spent any time in Europe and have no sense of what the culture there is, so thanks for the information.

Gary
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