How many people from USA?

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How many people from USA?

Postby LKP1231 on September 30th, 2014, 8:40 am

I'm just noticing many of you all are not from the US. Is this true? I ask only because the BFS term has not been mentioned by any doctor I've seen yet and I'm wondering if the US doesn't recognize it so much? No one, with the exception of the first GP I went to even suggested that it was something benign. Not that any of them thought it was something awful either, but suggested vitamin deficiencies or spine issues (which it is not). Anyway just curious. Thanks!
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Re: How many people from USA?

Postby misterjuanperalta on September 30th, 2014, 8:42 am

USA member here
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Re: How many people from USA?

Postby LKP1231 on September 30th, 2014, 8:58 am

And your docs used that term?
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Re: How many people from USA?

Postby MarioMangler on September 30th, 2014, 9:59 am

I am from the US, and there are some doctors who just won't call it a syndrome. Either way, if they say those are just benign twitches it means the same thing. It's really just nitpicky if you want to get fancy and call it an actual syndrome with a name.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How many people from USA?

Postby LKP1231 on September 30th, 2014, 10:26 am

As long as they say benign I really don't care what they call it!!! We will see ok thurs after emg
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Re: How many people from USA?

Postby RobJ on October 5th, 2014, 5:52 am

I'm going to get beat up on this. I'm sure. I've only found one doctor who has ever said BFS / BCFS and they were not someone that I would call a good neuro.

Most don't mention the words BFS. They usually don't say much. I've found most doctors can't even pronounce the word fasciculate properly and they call it a spasm (improperly) or a twitch.

When I obtained my medical records, some don't even mention it, and this is when I can demonstrate the twitching in the office quite convincingly in multiple spots, they stare like a deer in the headlights, then things go quiet in the office, then the doctor says "I'm not concerned because it's been so many years." real odd conversation at this point, like the doctor is pre-occupied. Asks me then demands I see a neuro again, I say no, he says "you don't want to know do you?" This doctor can pronounce the word properly and has had I patient with you know what in his 30 years....I'm his only other patient in 30 years that fasciculates as much as I do.

I like the way one neuro explained it. Doesn't believe in BFS. Thinks it's a made up community thing, trying to put words to a disorder they can't diagnose. He said it's chronic fasciculations, that's all it is, doesn't even consider my cramps which I could demonstrate a cramp in the office, anything, not even listed on my record. You fasciculate so does everyone else, you just happen to fasciculate more. He said "You know I urinate more than others. I don't have a disorder or a disease. I just urinate more. You fasciculate more."

I'm from the USA and I've found most doctor's and neuro's just don't know....
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Re: How many people from USA?

Postby LKP1231 on October 5th, 2014, 6:52 am

It sucks. You want doctors to know their stuff. And they know the textbook stuff and the test procedures. But sometimes you throw something with no clear explanation at them that doesn't read in a book and they're in denial. Maybe the more experienced are better with that. Or not.
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Re: How many people from USA?

Postby CptT on October 5th, 2014, 12:53 pm

It is recognized in the USA as there is a specific coding that covers BFS with respect to insurance billing.
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Re: How many people from USA?

Postby LKP1231 on October 5th, 2014, 1:10 pm

Well my neuro doesn't seem to acknowledge it.
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Re: How many people from USA?

Postby RobJ on October 5th, 2014, 1:21 pm

Like I said, One doctor in 20 plus years have mentioned BFS. None of them have ever written BFS in my medical records. It's chronic fasciculations in all my medical files.
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Re: How many people from USA?

Postby LKP1231 on October 5th, 2014, 1:53 pm

At least it's acknowledged I some way tho. Mine won't even suggest that it can happen for no known reason
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