BFS Survey

Post your questions about BFS here

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Postby crazyelvis on February 15th, 2007, 9:34 pm

1. Age
27
2. Gender
Male
3. Race
Caucasian
4. Length of time you have been twitching?
2 1/2 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
No
6. Do you have any Anxiety or OCD disorders?
I suffer from Post Traumatic Stress Disorder
7. Any other medical conditions that may be connected to BFS?
?
8. Did you go through the typical ALS scare so common on this forum?
Yes
9. Body region most affected?
Legs, Feet
10. Most unusual area affected?
Top Lip
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Postby mickey98 on March 8th, 2007, 11:49 am

1. 25, nearly 26
2. female
3. white
4. since november 2006
5. possibly stress that has built up over the past 10 years with no release, i also had some sort of neck infection after surgery.
6. anxiety built up when i didn't know why i was twitching, but I also tend to stress pretty easily about anything that happens unexpectedly :)
7. Total thyroid removal in july 2006
8. yup, thought i was gonna die.
9. calves and thighs.
10. ear, tip of nose & booty cheeks.
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Postby Thumpandbabe on March 8th, 2007, 6:39 pm

1. 40
2. Female
3. White
4. 6 Years This Month!!!
5. Had chicken pox at 27 years old. Started twitching years later...did the virus possibly lie dormant?! Also, very stressful period in my life in March '01.
6. Yes and Yes.
7. No other medical conditions.
8. Very very badly. Checked myself 24-7. Drove family and friends crazy. Went to Neurologist, Had EMG, All Normal.
9. Back then, all throughout my body, now, mostly my upper legs and right thumb.
10. Maybe, lip and butt
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Survey Reply

Postby metta on March 25th, 2007, 12:14 pm

1. Age: 52

2. Gender: Female

3. Race: Caucasian

4. Length of time you have been twitching? 7 months and counting...
(Beginning August 2006)

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
` 2 Back injuries
` Shingles (herpes zoster) outbreak (triggered by the 2nd back injury)
` Albuterol inhaler for asthma (triggerd by a mold/chemical exposure)
` Fatigue

6. Do you have any Anxiety or OCD disorders? No

7. Any other medical conditions that may be connected to BFS?
Yes. See "My BFS Experience" below for more details.

8. Did you go through the typical ALS scare so common on this forum?
No. I have a healthy skepticism of traditional allopathic medicine and I am an information hound, so when the symptoms began, I began doing my research. I quickly found the symptom pattern (diagnosis) along with steps I could take to begin managing the twitching.

9. Body region most affected?
Right arm & hand, right foot, left shoulder -- although I seem more prone to body-wide fasciculation now than I was initially.

10. Most unusual area affected? Neck and face
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Postby Angie on April 19th, 2007, 9:22 am

1. 36
2. Female
3. Caucasian
4. 3 mos
5. Was sick all winter with thing after thing. Terrible cold, stomach flu, chest congestion, etc. Started a new job, my brother was in the hospital and then my dog died. :shock: When my stress decreased, my twitches began, but I was still sick with the flu. My eye twiched for 8 weeks and finally lessened.
6. Not diagnosed
7. Low iron may be a factor
8. Yes- was on the verge of a total nervous breakdown and still feel anxiety over it even after an EMG, MRI, etc.
9. Eye, then it varies all over
10. Small nerves throughout my body- chest area.
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Re: BFS Survey

Postby shannonem on April 24th, 2007, 9:34 pm

1. 27
2. Female
3. Caucasian
4. Since December 26 '06 (4 Months)
5. Nothing! I was sitting on the couch, noticing my calf twitching. 3 hours later, it hadn't stopped. I freaked. It's still twitiching!
6. Wouldn't say "disorder." I'm an axious persion with a DISTANT history of panic attacks. This twitching, however, makes me CRAZY! Talk about anxious! I swear this forum/seeing other people with the same symptoms is the only thing keeping me from being institutionalized. :)
7. Have pretty gnarly asthma/use Albuterol a lot. Haven't officially been diagnosed with BFS, but they can't figure out what it is and this is what they default to. My neuro said just that: "I don't know what's causing it, but you don't have MS and this doesn't present like ALS. There's something called Benign Fasciculation Syndrome...maybe it's that."
8. My God yes! I'm still scared! I'm an RN and work on my feet for 13-hour shifts. At the end of the day (and on the day after work) I'm so twitchy and shaky that I'm convinced it must be SOMETHING worse than BFS (the default is always ALS). I'm going crazy!
9. Arches of my feet, bilaterally, go CONSTANTLY. 100% of the time. NOTHING stops 'em. My right calf also goes pretty crazy, as does the space just anterior to my elbow. What really scares me is when my thumbs get going...that produces a really strong jerk. :evil:
10. Chin, Eardrum/Tympanic Membrane

Will someone, anyone, help convince me I'm gonna live? I'm getting married in September, and I'm just certain that I'm going to have to roll myself down the aisle in a wheelchair and say "I do" by blinking or something.

Thanks. :)
*--Shannon--*
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Postby k9ck on April 25th, 2007, 7:50 am

Shannon,

post your story in the support thread as a new poster, most people will see it and respond there. Welcome, Terri
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Postby StacyH on May 4th, 2007, 10:01 am

1. Age
2. Gender
3. Race
4. Length of time you have been twitching?
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
6. Do you have any Anxiety or OCD disorders?
7. Any other medical conditions that may be connected to BFS?
8. Did you go through the typical ALS scare so common on this forum?
9. Body region most affected?
10. Most unusual area affected?
Feel free to add more


1. 35 (started when I was 24)

2. Female

3. Caucasian

4. 11½ years

5. Began three months after I discontinued therapy with Accutane. Now it will relapse in serious times of stress or my curent "flare" was after a good sinus infection that kept me in bed for two days.

6. I do know, but only after this all began.

7. They cannot find anything wrong with me.

8. Yes. It was horrible. From the onset of my symptoms I had a full work up a Mayo Clinic within 1 month by the head of neurology. He told me that I was fine but that I had him convinced that I had **s. I was so convinced I was doomed that I tried to call off my wedding (good thing my husband said forget it - he would take the good with the bad)!!!

9. I twitch everywhere. At times it will be confined to the regions that I have other symptoms, perceived weakness, cramping, burning sensations, vibrations.

10. My privates - I actually stopped what I was doing and went "Ok - now that takes the prize!!!!!

Thanks for the survey. What I am most amazed by is that when I started all of this 11½ years ago, I actually called the **S Society for information. They sent me an article on Benign Fasciculation Syndrome back in the mail. What really bothers me is that if they were able to provide that information to me 11½ years ago, why don't the doctors hand out information on this syndrome instead of just saying that we are fine. It's hard to believe that something so troubling could be labled as "benign". One of my neurologists seem to be oblivious to any information on this condition.
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Postby Phunny Phil on May 7th, 2007, 7:09 am

1. Age = 43
2. Gender = male
3. Race = caucasian
4. Length of time you have been twitching? = 2 years
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) = nothing obvious - possible insect bite (but tests for lyme or west nile at the time were negative)
6. Do you have any Anxiety or OCD disorders? = nothing diagnosed, however I believe I'm a tad ADD, plus occasionally have severe panic attacks (I've had these for 30 years - they're not BFS related)
7. Any other medical conditions that may be connected to BFS? = none
8. Did you go through the typical ALS scare so common on this forum? = I actually thought MS was more likely
9. Body region most affected? = everywhere, but if I had to rank: calves, fingers, eyes, forearms, thighs, chest, adbomen, upper arms, cheeks/face, head, buttocks, feet
10. Most unusual area affected? = I like to think all my body parts are usual ;)
"Never let the fear of striking out get in your way." - Babe Ruth

"It's hard to beat a person who never gives up." - Babe Ruth
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Postby lindyman on June 4th, 2007, 11:18 pm

1. Age = 40
2. Gender = male
3. Race = caucasian
4. Length of time you have been twitching? = 6 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) = I had a fever that was most likely caused from taking expired valium (Antenax). I also hit the back of my neck on the bed head when leaping back into bed with the lights out. I also have an EXTREMELY STRESSFUL job as the property manager of my Government Dept.
6. Do you have any Anxiety or OCD disorders? = I'm a "type A" person who has had his fair share of shingles, stomach ulcers and stress rashes in their time.
7. Any other medical conditions that may be connected to BFS? Besides hitting the back of my neck I also have 2 bulged discs in my neck from whiplash in 2000.
8. Did you go through the typical ALS scare so common on this forum? Yup. It all got worse when I found out 2 people I knew had MND (ALS).
9. Body region most affected? = everywhere. It tends to be in my calves mostly but if I lift weights it will go where I have worked the muscles.
10. Most unusual area affected? = Nothing is unusual to me after having it for 6 months.
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Postby coldbliss on June 11th, 2007, 1:30 pm

1. Age (36)
2. Gender (M)
3. Race (White)
4. Length of time you have been twitching? (2 weeks)
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) I can't identify a source.
6. Do you have any Anxiety or OCD disorders? Yes...but I doubt this was a trigger for my twitches at the time.
7. Any other medical conditions that may be connected to BFS? I have no clue.
8. Did you go through the typical ALS scare so common on this forum? A small one until I found that a.) ALS is exceptionally rare and b.) my muscle strength and balance is in tip-top shape.
9. Body region most affected? All over. I get twitches in my back, left arm, right thigh, left calf.
10. Most unusual area affected? I had some muscle spasms in my inner ear. This might be related to BFS.
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Postby Cam on June 12th, 2007, 8:30 am

1. 29
2. Female
3. Caucasian
4. 7 1/2 years
5. Possibly birth control, loss of a loved one, post-partum
6. No
7. Epstein Barr virus in my childhood, neck injury, chronic fatigue syndrome
8. Yes of course!
9. legs and arms
10. they all feel unusual
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Postby Doogie on June 12th, 2007, 10:41 am

1. Age - 29
2. Gender - M
3. Race - Caucasian
4. Length of time you have been twitching? - 3 or 4 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) - Nothing as such, though it came hand in hand with the weakness feelings and chiropracty
6. Do you have any Anxiety or OCD disorders? - I'm a hypochondriac
7. Any other medical conditions that may be connected to BFS? - Damaged neck leading to neuralgia and a slight scaitic problem
8. Did you go through the typical ALS scare so common on this forum? - YES, wish I hadn't but yes
9. Body region most affected? - feet and calves occasionally quads and very rarely arms
10. Most unusual area affected? - nothing out of the ordinary
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Postby twitchmebaby on June 12th, 2007, 10:47 am

1. Age (32)
2. Gender (M)
3. Race (White)
4. Length of time you have been twitching? 3 - 4 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) I can't identify a source, large physical exertion perhaps.
6. Do you have any Anxiety or OCD disorders? Yes...but this has ramped health anxiety way up!
7. Any other medical conditions that may be connected to BFS? No
8. Did you go through the typical ALS scare so common on this forum? yes, and still do, EMG helped and day by day as they say.
9. Body region most affected? Calves, feet arched and thighs but All over.
10. Most unusual area affected? Hard to say at this point. Seems no place off limits.
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Postby lineofgennari on June 15th, 2007, 10:15 am

1. Age 42.
2. Gender Male.
3. Race White.
4. Twitching for 2 years.
5. Triggers: Possibly just the news of my brother's MS diagnosis. Also, I had been started on statins for cholesterol about a year and a half before the twitches became increased and noticeable.
6. Was dx'd with generalized anxiety disorder in 1997, and saw a psychiatrist for a while to work out issues. Never medicated, never debilitated by it, unless you count the anxiety over bfs and its sensory phenomena.
7. No other illnesses.
8. Never worried about ALS--know too much about it from my work. Have worried almost incessantly for the last 6 months about MS, though.
9. Probably hands, arms, and calves.
10. Eardrum is weird, as are pubic/perineal muscles.
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