re name this syndrome

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re name this syndrome

Postby Floater on September 24th, 2004, 9:58 pm

If you could rename Benign Fasciculation Syndrome to something else more credible,, what would you name it? the word benign in this illness doesnt help us and there is more symptoms than just fasciculations,,

We need a more credible name.. this illness comes with suffering and we are just blown off by doctors with no real answers.

any suggestions?

I think it should be named after the first person diagnosed with this disorder.. who was he or she?
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No

Postby dont on September 24th, 2004, 10:02 pm

no let's not name it after a person. That other thing is sometimes called by a person's name. Too much of reminder.

Let's name it the *&^% &%^$#@! *)$%^ ^%$# &^%$ *& &^%$

You can PM if you want to know what that is.
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Postby amy_twitch on September 24th, 2004, 10:55 pm

Ahhh--I could think of many many expletives like Karen!

However, all kidding aside, I see where you're coming from. It really sucks that doctors sometimes tend to 'cast us off' because they don't have a 'course' to follow when the word 'benign' comes into play. I for one, switched to a new GP because my first one had zero empathy. My current doc is awesome!

I think the word benign makes the docs stop taking further action with us. Yet, for us, the word benign makes us think: '...benign as opposed to what???'...then we search for the alternatives--yikes! We end up in worry-mode wondering if our condition will eventually morph into non-benign status. That is until we find this web site and become Mayo Clinic study and EMG experts.

I can't think of a creative name, but I could imagine something that would force the doctors to conduct a more thorough approach. If my first doctor would have said: "Upon examining you, I believe you're experiencing benign fasiculations, and I'm going to CONFIRM that through some tests so you won't have any lingering worries". After the 'benign' is confirmed, then the docs should sit us down and discuss the process of anxiety, pain and fatigue management....and then decide the best course of treatment. This might entail drugs or a psychotherapist to help us understand anxiety, etc.... This way the doctor is working on closing the loop. Too many people on this board seem to have been left in the dark once their docs uttered the word 'benign'.

Humm...maybe some day, doctors can keep a flyer on file to hand to patients like us. It could be 'BFS in a nutshell'. You know, when you first find out you're pregnant, you typically leave your first OB appointment with tons of papers and pamphlets and samples etc. You read through them and know exactly what to expect and when to worry. Just having those papers is like having a bible for a first time mom. I bet a lot of us would have stressed a heck of a lot less if our doctors handed us a flyer with Arron's "BFS in a Nutshell" advice on our very first visit. The name could be more credible sounding, but having an empathetic doctor who can hand out good advice is priceless.

-good night all!
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Postby LeeNC on September 25th, 2004, 8:41 am

How about NSUE, for "Neuralgic Syndrome of Unknown Etiology"? Nah, it won't work once someone DOES discover a cause.

Or DNS, for "Diffuse Neuralgic Syndrome"? Eew, too close to you-know-what. Reorder it to SDN, for "Syndrome of Diffuse Neuralgia." Doesn't have a ring to it

Or DND, for "Diffuse Neuralgic Disorder"? I kinda like that one. People might think it results from playing Dungeons & Dragons too much, but hey.

Amy, I SO agree with you that the medical community could do a better job of alleviating our anxiety. Most of us became (reasonably) anxious when our symptoms began, but the anxiety really intensified once we found out what the symptoms *might* mean. Many of us have said we kinda lost our sanity in the time between starting the BFS and finding this forum. For me, it was a few weeks of Hail, for others it has been months...or even years. Maybe we should each write a "fact sheet" and send it to our docs? Nah, some docs might be insulted that we think we know it all; let's not Piece 'em off.

BFS sure is a clumsy name. To say "Benign Fasciculation Syndrome" is lame, because how many people know what fasciculations are? To say "BFS" begs for the explanation of what it stands for. On its own, it reminds me of a VERY old gag in National Lampoon mag: They published an article on the warning signs of "TF" (Terminal Flatulence). At that time, my humor was unsophisticated enough to enjoy the piece. By the way, warning signs included unexplained death of a pet, peeling wallpaper, wilting houseplants, etc. And "BFS" is also too close to "BFD," which is, at least for people of a certain age, shorthand for Big Duckin' Deal.

I sure can't write a short post, can I? There was recently a thread here about semantics, with the point made that BFS is a SYNDROME rather than a DISEASE, and it is not something with which you are DIAGNOSED. Yet my doc says BFS is diagnosed once the Other Stuff is ruled out. With such variety of symptoms, perceptions, and theories on the cause, it really IS hard to name. I think SYNDROME should be in the name, though.

--LeeNC
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Postby LeeNC on September 25th, 2004, 6:20 pm

Me again.

I don't exactly know what neuralgia is. Is it covered by our symptoms? I mean, is BFS in the nerves, or is it in the muscles? Or is there no reason to distinguish?

Wanted to add that my sense of humor never did evolve. I enjoy the same type of humor as your average high school boy, although I'm an old woman. Love "Something About Mary," "Airplane," "Young Frankenstein," Monty Python, etc. Tonight I'm going to enjoy a borrowed Austin Powers DVD, with an anti-twitch remedy (beer).

What are you doing this weekend, besides thinking about what to rename our syndrome?

--LeeNC
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Postby garym on September 25th, 2004, 10:25 pm

Although we may not die from it, the effects it has on our lives is far from benign. So I vote for something like the following:

BSBFS- Bull Sh_!_T it's Benign! Fasciculation Syndrome

That's the best this boy from Texas can come up with :wink: .

Gary
Last edited by garym on January 19th, 2005, 9:34 pm, edited 1 time in total.
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Postby LeeNC on September 26th, 2004, 8:56 am

:lol: You Texas boys can really cut to the chase. Loved it!
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Naming the syndrome

Postby kristinz on January 15th, 2005, 8:53 am

I could not sleep last night, thus, have been on the forum from 5 am until now! At this point, due to a lack of sleep and a twitching calf, arm and thigh- I would have to agree with the *&[email protected]#%^&*%$##%^! posting! However, this part of the forum makes me laugh even if it's early in the morning!

Got to love those Texas boys!
It could be worse! :)
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Postby Roger G. on January 19th, 2005, 7:37 pm

I always knew their was a reason I was a Dallas Cowboys fan 8)
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