BFS Survey

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Postby j1 on October 4th, 2002, 4:00 pm

1. Age - 27

2. Gender - Male

3. Race - White

4. Length of time you have been twitching? - 4 months

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) - not that I know of...I started stressing about MS because of a little numbness and strange feeling in my wrist. I worked myself up really bad...then the twitching started..the rest is history..I am still worried to this day, even after a clean EMG @ 4 weeks of twitching.

6. Do you have any Anxiety or OCD disorders? Anxiety..I have always been somewhat of a hypochondriac and worrier.

7. Any other medical conditions that may be connected to BFS? I have a little vitiligo.. and IBS but not really.

8. Did you go through the typical ALS scare so common on this forum? Hell yeah...I am still in it.

9. Body region most affected? calves and insteps of feet 24/7, left hand on palm side underneath pinky - 24/7 for the last month+.

10. Most unusual area affected: lips and cheeks.
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Postby tlotoxl on October 5th, 2002, 5:37 am

Neat, I can just copy and paste from the previous post. Well, almost :)

1. Age - 27

2. Gender - Male

3. Race - White

4. Length of time you have been twitching? - 2 years

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) or would you like to tell a rambling story?

Almost 3 years ago I drank too much Japanese potato spirits on Christmas eve and was sick for about a week and ended up with a bad sinus infection. On New Year's my baby finger on my right hand twitched for around 4 hours straight and, hypochondriac I am, worried about having some sort of degenerative brain disorder. Then I was fine for 10 months until October when I was walking around the hills in Dazaifu and started to feel weird tingling feelings in my calves. It got steadily worse since then until this summer (1.5 years later), when my girlfriend had to go back home (ie, 12 time zones away), it got so bad that I went to a doctor who brought up the possibility of ALS and then booked me an appointment with a neurologist for the following week. A very bad week of waiting. The neurologist looked very grave until he tested my grip strength, but then he said I was fine and with help from the people here I've stopped worrying so much and the symptoms have lessened.

6. Do you have any Anxiety or OCD disorders? Anxiety..I have always been somewhat of a hypochondriac and worrier.

7. Any other medical conditions that may be connected to BFS? Restless legs.

8. Did you go through the typical ALS scare so common on this forum? Yes.

9. Body region most affected? Calves maybe, but really it goes after my whole body.

10. Most unusual area affected: Forehead, back.

-----

So, do only white people get BFS or what? :?
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Postby Davidd on October 5th, 2002, 8:50 am

J1--

Your story sounds all too familiar to me... I developed numbness and tingling back in early July which localized to my right wrist...Since the end of July, that has gone away and I am left with twitching. I stressed out big time over the numbness and tingling but don't think I had any sort of virus. BTW, I'm 28. I'm working on the sleeping problem I'm having. How do you handle this stuff?

--David
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Postby j1 on October 6th, 2002, 10:48 am

Davidd,

It is not easy...I still have a feat that something more ominous is present (even after the EMG, etc...) I have a a hard time convincing myself that a benign disorder can cause this many symptoms. I think the only thing that wil help is time. The longer I twitch/ache/ etc.. without any weakness the more I will believe.

I had a lot of trouble with the sleeping thing in the beginning but have since been able to sleep through the night. At first, I had an internal vibration/twitch in my neck that would bounce my head all over the place - this made sleeping very difficult. Things have gotten a little better on that front. I don't know....

Hey.. you sound like you are around the same time period as me...feel free to email me @ [email protected]

J1-
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Postby Guest on October 7th, 2002, 9:30 am

1. 32
2. Female
3. White
4. 6 months
5. After a bout of severe headaches lasting a couple of months.
6. Anxiety, depression, hypochondria!
7. No.
8. Yep, thought I had ALS or MS
9. All over
10. Tongue

Funny how we're all anxious kind of people!
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Postby Annie on October 7th, 2002, 10:13 pm

Very, very interested set of posts.
1. 51
2. Female
3. White
4. 5 months
5. I had gone through a series of health scares in the prior few months...
abnormal mammogram, lump on neck, biopsy on face... all benign. Scared me, though.
6. Generalized anxiety disorder with panic attacks for many years; treated with therapy and medication (celexa, klonopin, etc.); controlled but not "cured."
7. No other medical problems; very healthy and physically fit.
8. ALS scare - heck, yes. My husband's cousin has ALS, so unfortunately I know about it.
9. Hands, shoulders, hamstrings, calves, instep, forearms, buttocks, well, everywhere.
10. When I get BFs in the back of my hand they have the effect of "jiggling" my fingers a bit.

Just a comment: I am really struck by the high prevalence of anxiety disorders among respondents to this little survey. I think there is definitely something going on here, although I suspect the relationship is not all that simple.
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Postby rar on October 8th, 2002, 11:21 pm

1. Age 37
2. Gender Male
3. Race Swedish
4. Length of time you have been twitching? 24 years (I guess I got braggin' rights here!, hee hee hee hee!)
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) Puberty?
6. Do you have any Anxiety or OCD disorders? I am kind of a worrier.
7. Any other medical conditions that may be connected to BFS? I am in excellent health, except the accupuncturist says I have some kind of imbalance.
8. Did you go through the typical ALS scare so common on this forum? No, but recently I worried about the Michael J. Fox disease, then after discounting that als did worry me a bit, until I got more info.
9. Body region most affected? Calves
10. Most unusual area affected? Esophagus?
Feel free to add more:

I would like to note a few things after reading this cool site for about a month now.

1. The chances of getting als are about 1 in 100,000. Meaning you have about 1/1000 of 1% chance of getting it. That's pretty *beep* slim odds. I would be interested in seeing the odds of getting mangled and killed in a car wreck, etc. etc.

2. Has anyone tried alternative therapies? I am trying accupuncture and even if it doesn't work, which it may, at least it comes closer to dealing with wierd ailments than Western medicine can even dream of at this point. It does definately seem to me that the twitches could be related to the circulation of chi.

3. Perhaps the twitching is actaully beneficial. Perhaps something good is going on, maybe the twitching is the bodies way of processing something. I used to find the twitching quite pleasant, somewhat like a massage, until I started worrying about it. Now I guess I kind of like it again sometimes.

4. Why is everyone so into the meds? Meditation, counselling, shamanic voyaging, etc. is a far better way to find peace and wisdom than the primitive and barely tested drugs used for anxiety today.

5. Is anyone here going to die someday? When?
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Postby tlotoxl on October 8th, 2002, 11:55 pm

speaking of alternative therapies, when i was in india i had an ayurvedic massage. unfortunately i only had the money to get it once, but apparently if you have them on a daily basis it's a bit like acupuncture -- it's supposed to improve circulation and even out your body's 'energy'. the guy who ran my hotel in kochi and also gave massages swore that he had cured one guy (from lakshadweep, famous apparently) of paralysis of the legs. i'm not totally convinced, but if i'm in southern india and i have more money, i'll try a week-long course out for sure.
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Postby SeanC on October 9th, 2002, 1:55 am

Age - 31
Gender - male
Race - caucasian
Length of time you have been twitching - 3 months
Was there anything that appeared to trigger the twitching? - no
Do you have any Anxiety or OCD disorders? - no
Any other medical conditions that may be connected to BFS? - no
Did you go through the typical ALS scare so common on this forum? Absolutely, scared me rotten!
Body region most affected? - left thumb
Most unusual area affected? - tongue...after reading something on this forum that said tongue twitches were a sign of ALS (or MND as they call it in Australia) it scared me to the stage that I couldn't sleep and had to wait 3 weeks before my neuro appointment, which turned out to be fine :)
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Postby Guest on October 9th, 2002, 1:46 pm

Age - 33
Gender - male
Race - caucasian
Length of time you have been twitching - 6 months
Was there anything that appeared to trigger the twitching? - no
Do you have any Anxiety or OCD disorders? - mild OCD
Any other medical conditions that may be connected to BFS? - no
Did you go through the typical ALS scare so common on this forum? absolutely, ALS has been the worst scare I ever went through
Body region most affected? - upper thighs
Most unusual area affected? - eardrum and diaphragm

additional remarks:

- twitching more emphasized in proximal muscels (i.e. more in trunk, face and upper extremities, less twitching in calves, feet and hands) I have read in a neurology textbook, that proximal muscle twitching is more ominous than distal twitching (hands, calves), so that's scary :(

- almost no other symptoms other than twitching (only some very occasional mild tingling, numbness, buzzing )

- Very concernd about slow onset ALS after having read quite a few stories
on PALS pages where twitching obviously preceeded weakness by several years :(
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Postby Guest on October 11th, 2002, 12:34 am

So seriously now, is BFS mostly experienced by white people or is this survey just self-selecting?
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response

Postby twitchchick on October 11th, 2002, 4:31 pm

1. 30
2. F
3. White
4. 7 years
5. No, but was under a tremendous amount of stress at work when they started. Also had just returned for a trip from Jamaica a few weeks before.
6. Anxiety
7. MVP, chronic chest pain, various allergies
8. OH MY GOSH! YES YES!
9. Calves, upper left bicep, and left chest
10. Nose
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Postby Guest on October 11th, 2002, 9:17 pm

1. 30 years old
2. F
3. White
4. 1year
5. I was told that I had postpartum depression.And alot of stress.
6. Aniexty
7. No
8. Yes Very bad,still trying to belive I don't have it (I had clean EMG I month ago)
9. All over
10. Chin
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Postby Brian_B on October 11th, 2002, 9:22 pm

1. 26
2. Male
3. White
4. a little over a year
5. not that I remember no
6. anxiety big time
7. not that I know of
8. Yes big time
9. calves, feet and upper legs
10. tie between jaw and buttocks
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Postby GUEST on October 12th, 2002, 9:12 am

CALVES98% OF THE TIME
ANXIETY,STRESS ALMOST ALL OF THE TIME!!!!!!!
I THINK WE ARE GETTING TO THE BOTTOM OF THIS, ANSWER IS STRESS.
WE DO NOT HAVE ALS,LMN MS OR ANYTHING ELSE.
WE HAVE BEEN TESTED AND PAST THE TEST OF TIME.
TWITCHING WITHOUT REAL. YES REAL PROGRESSIVE WEAKNESS IS ALWAYS NOT ALS.
WE ALL KNOW THIS NOW. THE DR. TOLD US SO.
WE NEED TO START TO ACCEPT THIS GREAT NEWS AND STOP LOOKING FOR ANSWERS WHEN THEY ARE RIGHT IN FRONT OF OUR NOSE.
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