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Should BFS have a name change?

PostPosted: January 10th, 2014, 2:28 am
by Watereddown
Who thinks BFS needs to change its name to something that encompasses the entire nervous system? When people think BFS (and not many do) they think of only twitching. But like many on this forum have shown, BFS comes in many different shapes and forums. I just believe people will begin to believe a diagnosis of BFS if there was an actual diagnostic term connecting feelings like tingling, buzzing, vibrations and twitching all under one common condition. I think this is why so many of us have such a hard time accepting the fact that it is only BFS that is wrong with us. These subtleties make a difference ya know! Having a hyperactive nervous system is not easy to come to terms with :/

Re: Should BFS have a name change?

PostPosted: January 10th, 2014, 10:24 am
by leaflea
Yes, I agree. Something like "neuromuscular hyperactivity disorder" NHD. I would like to get a better handle on what exactly that means, but I think it means all of it...twitching, buzzing, anxiety, tremor, fear, cramps, spasms, visible and invisible twitches, twitches you feel and ones you can't, variable frequencies and speeds, sometimes with hot spots, sometimes in odd places, accompanied by clean EMG and neuro exam.

Re: Should BFS have a name change?

PostPosted: January 10th, 2014, 1:21 pm
by veryworried123
basically what happened is this

dr said your twitching, its benign and we don't know why call me if anything else changes and have a nice day

the S in BFS i believe was created as its a catch all for all the other *beep* we go through that doesnt fit in any other bucket

Re: Should BFS have a name change?

PostPosted: January 10th, 2014, 3:37 pm
by aztwitchy
I totally agree...BFS is perhaps misleading. some neurologists I have seen refuse to use the term. then again we are a syndrome not a disease...so its just a grouping of symptoms and allows for us to at least band together and help cope and some push for more investigation.

Re: Should BFS have a name change?

PostPosted: January 10th, 2014, 7:29 pm
by SecretAgentMan
In my opinion a name is just a name. No matter what you call it, people diagnosed with it will identify with the symptoms associated with it and become it. The mind is a powerful thing.

Re: Should BFS have a name change?

PostPosted: January 19th, 2014, 7:51 pm
by SuziQ
Nothing wrong with the acronym "BFS" as long as you think of it as "Brain F--K Syndrome."

Then you've encompassed everything.

:)

Blessings,
Sue

Re: Should BFS have a name change?

PostPosted: January 19th, 2014, 11:35 pm
by veryworried123
That's probably the best name for bfs I've heard