BFS Survey

Post your questions about BFS here

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Re: BFS Survey

Postby missingoutonlife on April 9th, 2008, 1:56 pm

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?

1. 25
2. female
3. White
4. About nine weeks now, although had a quick bout of twitching (definitely not as bad) and cramping back in September but attributed it to just starting on Advair
5. Had a rough summer where I was sick all the time with bronchitis, hospitalized, might have contributed to the first round of twitching. This time around, I was very stressed and depressed due to the loss of a loved one and the illness of another one
6. Anxiety and OCD
7. I have TOS, Asthma, GERD, maybe some TMJ but probably all unrelated to the twitching. I have ET (essential tremor) though which is related
8. Still am going through it really bad even after clean EMG, hope to be over it soon
9. Was my right leg, right now it's my left arm so I guess it jumps around
10. Throat, tongue, inside of cheek
Twitching since February 2008
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Re: BFS Survey

Postby vmarsh on May 23rd, 2008, 9:23 am

1. 23
2. Female
3. Caucasian
4. Three months
5. First year medical student, I was very stressed out about having every disease...noticed the twitching, googled, found *** and the twitching got worse. I also had what may have been a sinus infection before the twitching although it was never formally diagnosed.
6. I have never been diagnosed although I think I fit the diagnostic criteria of a generalized anxiety disorder.
7. Not that I can think of, always healthy as a horse (except right now)
8. Did and still do!
9. My right calf and arch of foot
10. Probably tongue although every muscle has twitched at some point.

I thought it would be interesting to post other symptoms: I have also felt buzzing, shaking, tremors, pain and myoclonus (very bad at night)
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Re: BFS Survey

Postby morzani on June 7th, 2008, 5:23 pm

51
female
caucasian
8 month in my arch feet and toes, non stop, 3 or more years before started twitching on eyes,mouth , nose, and random twitches on other parts of my body , but very sporadic, so I didn t care about them,
5 month ago I have what I think is palmaris brevis spasm in both hands.
I think what tiggered my twitches was extreme anxiety.
Other medical conditions . may be fybromyalgia, genital herpes that I have for 25 years but is very recurrent now.
Of course like all of you I have that tipical scare.
Most affected my feet arch and toes, non stop since october 2007.
,most unusual place , I don t know, everything is unusual.
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Re: BFS Survey

Postby mamakaren on June 11th, 2008, 12:04 pm

1. Age 39
2. Gender Female
3. Race Caucasian
4. Length of time you have been twitching? This bout has been 5 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) Maybe the flu?
6. Do you have any Anxiety or OCD disorders? NO
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? I am still going through it
9. Body region most affected? calves and feet
10. Most unusual area affected? elbow
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Re: BFS Survey

Postby Rocketman on June 17th, 2008, 12:29 pm

1. 48
2. Male
3. Asian
4. 8 months
5. Began while I was taking Crestor 10 mg.
6. No
7. No
8. Oh yes, yes,yes. I had an uncle with ALS
9. Legs, bottom
10. ear
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Re: BFS Survey

Postby grasshopper1917 on July 15th, 2008, 1:13 pm

1. 32
2. Male
3. Scottish/French
4. 2 years on and off
5. Anxiety - it seems to get worse when I worried first bout was when I movd away from my home town. Recent bout is when I was worried about my health - I was having dizzy spells and tingling on my left side.
6. Worry to much about little symptoms and my health.
7. Dont think
8. No - I didnt have any ALS symptoms so I dnt worry about that.
9. Calves, feet, space between thumb and forefinger.
10. Temple
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Re: BFS Survey

Postby jeje3 on July 22nd, 2008, 4:14 pm

1. 40
2. M
3. Caucasian
4. 1 year
5. stressful decisions to make (not sure it started because of that - happened at the same time)
6. Anxiety
7. no
8. big time - still do occasionally
9. different with each relapse
10. eyelid - was unusual for me, and thumb jerking: scary
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Re: BFS Survey

Postby Koqie on September 13th, 2008, 12:37 am

1. 18
2.male
3.Hispanic
4. Length of time you have been twitching? 3 and a half months
5. Was there anything that appeared to trigger the twitching. A viral infection, paranoia of death
6. Do you have any Anxiety or OCD disorders? Oh yes, I have been anxious every minute of every day, for 3 months, even self contentiously.
7. Any other medical conditions that may be connected to BFS? Asthma, cholesterol
8. Did you go through the typical ALS scare so common on this forum? Of course!!
9. Body region most affected? calves, knee, thigh
10. Most unusual area affected? tounge

I get my twitches on an off, the leg region will twitch once every 7 minutes perhaps, when i am having a bad episode, sometimes my legs wont twitch at all and then i will notice another body part twitching, right now i have a burning sensation in my legs, that happens to leave when my mind is stimulated. My legs aren't weak but I feel like they will give out at any minute, even though I have not lost any strength since i started twitching (3 months). I also have palpitations and i'm not sure if that is common with bfs. i have high cholesterol, so i think that, might be a different issue, and ever since school started i only sleep 4 hours max, come home and sleep another 3.
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Re: BFS Survey

Postby Lily4 on September 18th, 2008, 1:05 pm

1) 29
2) Female
3) Caucasian
4) 4 months
5) I was very stressed at the time.
6) Due to the twitches I have anxiety.
7) No
8) Yes, haven't had one day since that I don't think about it. Probably will be scared for awhile.
9) Left Leg
10) Right underneath my ribs.
Be joyful in hope, patient in affliction and faithful in prayer ~ Romans 12:12
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Re: BFS Survey

Postby MarioMangler on September 18th, 2008, 5:39 pm

1. Age: 34
2. Gender: Male
3. Race: White
4. Length of time you have been twitching? About a month now
5. Was there anything that appeared to trigger the twitching? Nope. Nothing that I can remember. Other than stress and/or eyestrain. Some odd balance issues and neck problems too.
6. Do you have any Anxiety or OCD disorders? Yes, apparently I am an incredibly anxious person. I never realized that until recently though.
7. Any other medical conditions that may be connected to BFS? Crohn's/IBS, which flares up from time to time and has gotten very noticeable since I started twitching.
8. Did you go through the typical ALS scare so common on this forum? Oh yes. It was horrible. I was practically planning my funeral. I learned very quickly not to google symptoms. I actually had to go into my neurologists office and beg him to call me an idiot. :)
9. Body region most affected? Legs/right arm/face/back
10. Most unusual area affected? Testicles :-P

I haven't technically been diagnosed with BFS. I just assume I have it since I have a clean MRI and my neurologist said don't worry about ALS or MS. He said if I had ALS, I would know. He said he would have known it too, the minute I walked in the door. We didn't even bother with an EMG. He said that in his opinion, BFS really isn't even a disease anyway, it's just a clinical way of saying "jumpy nerves." It's a fancy way of saying you feel like you are sick, but you really aren't. Your brain is just looking for symptoms and tricking you. So he said just relax and chill out and hopefully it will eventually go away on its own. Once I heard that I learned not to stress about it.

He also advised me to do two things. 1. NEVER look up symptoms on the internet, and 2. NEVER test yourself for weakness. He said if you go around testing your strength, you will find weakness every time , and all you will do is freak yourself out. So he advised me to just go about my life and let nature work things out on its own. Has anyone else's doctor said something like this?

In any case, it's good to be here. I'm a comedy writer by trade so I try to keep a good sense of humor about things. I just assume all this will go away eventually. Although it sure is odd having BFS and IBS at the same time. Sometimes I produce so many odd colors that I feel like I'm the Lucky Charms leprechaun. What am I, a box of Crayola?

Keep your heads up, everybody. Remember, the key word in BFS is BENIGN. Always remember that. It could be a lot worse.
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: BFS Survey

Postby christiansoldier92 on October 12th, 2008, 8:38 pm

1. 16
2. Female
3. African American/Native American
4. around 21 months (almost 2 years)
5. I had walking pneumonia in 2005, along with the flu, several colds, and a low-grade viral infection/fever that the doctors did not know the cause.
6. No...but I do have a LOT of stress from school right now! (It has been like this for me throughout high school.)
7. I don't know. I have frequent heart palpitations, vision changes, muscle weakness, and general fatigue (I can never sleep enough! Even if I sleep for 15 hours, a lot of the time I don't feel rested). I also have a very low WBC count, a low WBC count, am anemic, and have a few other quirky things about my blood tests.
8. Not really. I mean, I was pretty ready to take on whatever came my way. But, I did do a lot of research on different disorders/diseases/illnesses etc. that had anything to do with muscle fasciculations.
9. My legs.
10. Inside of my vagina/around my rectum!!!!!!!!!!!!!!!!!!!!!!!!!
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Re: BFS Survey

Postby victornatareno on October 13th, 2008, 9:46 pm

1. Age
39
2. Gender
male
3. Race
Spanish
4. Length of time you have been twitching?
I twiched for 4 months. It has stopped for the past 2 months, but I still have burning sensations and sometimes numbness in my arms and hands.
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
I was drugged without knowing it at a get together.
6. Do you have any Anxiety or OCD disorders?
I had a lot of anxiety in the past. I feel better now.
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?
Not ALS, I thought I had MS.
9. Body region most affected?
my arms and hands.
10. Most unusual area affected?
my mouth
Feel free to add more
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Re: BFS Survey

Postby nervousguy1 on October 28th, 2008, 5:58 am

Guest wrote:Hi fellow BFSers,
I was thinking it might be interesting to start a survey about our individual experiences with BFS. It's totally unscientific, but maybe we can create a valuable pool of information for new BFS sufferers.
Please answer any of the following questions you feel are important.

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. 21
2. Male
3. White.
4. 2 months now
5. Viral infection and after a period of stress
6. Hypochondria
7. No
8. Yes
9. My right ankle
10. My genital areas and behind my ears

symptoms i have been experiencing :
*Burning pains in muscles
*Muscle fatigue
*Exercise intolerance
*Pains that are widespread like the twitches
*Twitches
*Cold sensations
*Sudden paraesthesia
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: BFS Survey

Postby LaurentCH on November 2nd, 2008, 6:22 am

1. 39
2. Male
3. White
4. 6 weeks now (since mid-september)
5. Fear of cancer (had to get biopsied) one week prior to the fascics. And two weeks of antibiotics prior to that to cure a very small infection in a toe.
6. Anxiety of getting deadly sick
7. Vitiligo, but I think this has nothing to do with BFS
8. Yes
9. Everywhere. Abdos, back, tights, rarely in the calves, whole arms, hands chest.
10. Abdos
More: Have passed two clinical neurological exams and one needle-emg at the swiss ALS-clinic. They seem to be sure I have BFS and nothing severe. They told me, even after 4 weeks of fascics they would have spotted something in the emg if ever there was evidence of something grave. I have also been told there that they see changes in the emg showing the dying motor neurons even prior to the fascics. They did not suggest me a second emg, everything seems fine. But as it is in the nature of BFS-patients I always doubt when fascics and tingling (in the feet) appear. My fasics are widespread and usually very short and subtle, a wormy feeling or as a cat would hit you with its tail. But sometimes I get also the hotspots for hours or days where it is usually a classical interval-facsics. It started with one hotspots in the abdos (during the fitness muscle training), then stopped to come back after another fitness-muscle-training with one hotspot in the back and from them from one day to another as widespread fascics.
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Re: BFS Survey

Postby lolalemm on December 9th, 2008, 4:19 pm

. Age 25
2. Gender F
3. Race White
4. Length of time you have been twitching? 5 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) I had a stressful summer, my moms bestfriend was dying of ALS
6. Do you have any Anxiety or OCD disorders? I wasn't diagnosed with any type of anxiety or ocd until I told my doctor about the twitching
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? YESSSSS! I am still a little scared that is the case
9. Body region most affected? calves
10. Most unusual area affected? butt cheek : )
Feel free to add more
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