BFS Survey

[Guest]

javens here.
I also had IBS on and of since 1 1/2 months before twitching started. I even saw a gastroentorologist for a workup for it.

[kim]

Just wanted to add my 2 cents!

1. I'm 39
2. Female
3. White
4. Eye started twitching in July 2002, body in Sept. 2002.
5. I am sure stress played a huge part. After 9/11 All my anxiety and OCD went into full tilt. Then my Mom got cancer that month, then my Mother-in-law got cancer in Oct. All kinds of bad stuff was happening around me, and I worried constantly. What was going to happen next? I had a flu shot in November 2001, (because of Anthrax scare, I was told I should get one to help with diagnosing of anthrax) I felt like I had a cold or symptoms of the cold for months afterward. Then I started getting all kinds of wierd sensations. In April 2002 I had flu-like symptoms and weird shooting pains in my inner elbows and knees. Then my back muscles were really sore and felt like they were burning if I tried to massage the area. Also the back of my head had the same sensation. (Extremely sensative to the touch). This went away after a month or so, but then I began to have tingling on the left side of my face, and it almost felt like I had the mumps (without swelling), This only lasted for a day or two, then my left leg went a bit numb a few days later. Then I started to feel that something was definitely up with my nervous system. I just felt like it was mis-fireing. I felt like there was all this activity going on inside, but I was standing still. (Hard to explain) Every Doctor I saw said it must be anxiety or depression. They all made me feel like a little kid who was making this stuff up! Granted, I am a hypochondriac, but I NEVER made frequent trips to the Dr.'s office until last year. By the end of summer I was twitching like a maniac! I went on SSRI (Zoloft) and the twitches became less severe. (There was a definite path to my twitching)
I believe my OCD and anxiety were the cause! But it still freaks me out over what your mind can do to your body!

6. Some OCD and anxiety for over 20 years (off and on) Extremely severe OCD and Anxiety for several months just prior to onset of twitching.
7. I do have HS2 which has been debated as having a connection.
8. I freaked out over the ALS thing! EMG and this site set me straight!
9. All parts of my body have twitched. No specific side, no specific area, just everywhere and anywhere!
10. Most unusual area that twitches is probably my stomach. It twitches deep inside and it feels like my intestines are shaking!

Hope this helps, hope I didn't go on too long!

Kim

[guest]

1. Age 41
2. Gender F
3. Race cacausian
4. Length of time you have been twitching? 16 years
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) inner ear infection
6. Do you have any Anxiety or OCD disorders? mild OCD
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
9. Body region most affected? Legs mostly in the beginning, now totally random
10. Most unusual area affected? eardrums

[John W]

1. Age of Onset was 26
2. Male
3. Cacausian
4. 10 years this month
5. A severe throat and ear infection. When I swallowed it shot pain into my ear. It lasted 10 days and also invovled facial numbness. It was clearly viral.
6. Due to no-one every telling me of BFS and convinced I had ALS. I freaked and was diagnosed with anxiety disorder.
7. Nothing other then everything described as connected to BFS
8. That's a big YES. I'll cover it in detail when I post my story. It's quite interesting as I lost almost everything in my life because of it.
9. Biceps
10. Big ones on the butt, but Throat for your survey. I found the tongue to be weird as well.

[lbeth]

1. 32
2. Female
3. Caucasian
4. 1 year
5. Not really, but had mild virus of some kind right before. Also stress maybe
6. Nothing diagnosed, except I think I am anxious about lots of things.
7. No
8. Yes
9. Legs, mostly calves. But get twitching everywhere in body to some extent.
10. Don't know.

[Guest]

1. Age - 16

2. Gender - Female

3. Race - caucasian

4. Length of time you have been twitching? - erm...difficult, ive had knocking/clicking sensations in my ear (which started it off) id say about 10mnths?

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) - That would take me back......i get ill such alot.


6. Do you have any Anxiety or OCD disorders? Ive been diagnosed with alotta things, its hard not to worry, + im taking my final exams.

7. Any other medical conditions that may be connected to BFS? My proff. @ the hospital thinks ive got something wrong, im waiting for an MRI.

8. Did you go through the typical ALS scare so common on this forum?
Yup, STill worried i might have a brain tumour ect. because i have "myclonic phernomina" but i think BFS is more likely.


9. Body region most affected? erm.....i have quite a few.....thighs, calves, buttocks, torso, arms, nose, side of foot, fingers (gah - i hate it in my fingers - fortunately its rare - mainly after ive played hockey in the cold)


10. Most unusual area affected? The muscel above your ear on your head. I hate that sooo much, takes away my concentration.

11. Does anyone else get it in the muscle above the ear?

[Carolmarie]

1. Age 47
2. Gender, F
3. Race, W
4. Length of time: 6 months
5. The only thing I can think of is that I had a dull headache off and on for about 2 months prior to twitching and felt very nauseous three days prior to the start of twitching. (Virus?) Also, In reference to herpes, I have had chicken pox, shingles. Interesting?
6. Not an anxious person
7. No other medical conditions
8. Yes, I did go through the scare and am still going through it, comes and goes depending on my mood.
9. Legs most affected.
10. Most unusual area: abdomen, lips (very creepy when it happens there.)

[Wats2002]

1. age: 32

2. gender: F

3. race: W

4. length of time: 3 months for twitching, however other strange symptoms such as muscle aches, joint pain, headaches, etc. started about 9 months ago.

5. I can't remember having anything specific at the onset, but my immune system seems weaker over the past few years... multiple cases of strep throat, sinus infections, flu, migraines, which I never had years ago. Migraines started with 1st pregnancy in 1997. Viral meningitis in July 1999. No IBS or gastro problems.

6. I have become more anxious and worrisome since I had my children.

7. MVP, Viral meningitis (1999), onset of migraines (1997).

8. Absolutely. My great aunt died of ALS at age 50. I did not know her, as she passed away before I was born, however I heard stories... very sad. I still read ALS sites and stories. I no longer think my symptoms follow the traditional onset of ALS, however neuro is in the process of conducting tests to rule out MS.

9. Started with fasciculations in my feet, along with crawly sensations, and some burning/tingling. Quickly progressed to entire body, within days.... calves, thighs, shoulders, hands, forearm, back, ribcage, lip... etc

10. most annoying is my lower left lip!

Happy twitching! God Bless.

[crj]

1. Age
33
2. Gender
F
3. Race
W
4. Length of time you have been twitching?
10 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
Bad case of pinkeye - I'd been free of pinkeye/eye infections following sinus trouble my whole life, but then starting about 3 years ago, everytime I get a sniffle, I get an eye infection. So I'd just finished yet another VERY nasty round of that (eye was actually swollen shut; it was so gross) when I noticed this strange tingling in my left arm and then a couple of days later the twitching began. I would lie awake wondering what horrible disease was befalling me.
6. Do you have any Anxiety or OCD disorders?
Nope.
7. Any other medical conditions that may be connected to BFS?
The amazing tendency to catch every single virus that comes my way. THis could have something to do with having a 5-year-old who's been in daycare his whole life. I get everything his schoolmates get.
8. Did you go through the typical ALS scare so common on this forum?
Yup. But I'd read this forum and knew it was a one in a zillion shot. Still, I had my grave dug by the age of 36 and wondered how my kid would cope with losing his only parent.
9. Body region most affected?
That depends on the day. Sometimes the arm/shoulder. Sometimes the muscle right in between my eyes. It's so often all over that I hardly notice anymore. Foot arches, calves, thighs...
10. Most unusual area affected?
PLaces I didn't even know I had muscles - ear canal, for one.

[coscobber]

I've had BFS for 4+ years now. First started with pain in ankles then twitching foot arches, calves, restless thighs. Right now have twitching thumb near palm in addition to legs, and occasional twitches elsewhere. Symptoms come & go. Only been totally unable to function one day in those four years. Remain athetically active. Working w/ neurologist whole time, but litle to be done. Take Neurotin sporadically. May help somewhat, does mentally. Did have ALS panic at beginning which aggravated symptoms. No known illness prior to starting though have GERD and take Nexium for. General anxiety not made better by world situation.

[Jenn311]

1.31
2.F
3. White girl
4.4.5 yrs.
5. It started during a stressful time in my life, as I was going through a divorce...it started as a tingling sensation all over my body and that was stressful, then the twitching set in. It has come and go over the years, preceeded by stressful events.
6. I suffer from GAD....probably always have. I should probably be on some meds, but hate the weight gain.
7. Yeah I have mitral valve prolapse as well, and chronic sinus infections.
8. Scare? You bet! Big time. But after my doctor told me it was nothing, that I didn't need to see a neuro, I calmed down quite a bit.
9. Mostly legs, but all over...My hands have a slight tremor as well.
10. The tip of my nose I guess...that feels the weirdest

[Twitchalotus]

1. Age
29

2. Gender
M

3. Race
Caucasian white

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

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
A very heavy flu
6. Do you have any Anxiety or OCD disorders?
I had/have OCD

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?
Yes.

9. Body region most affected?
Insteps,calves,eyes,hand,knees (soft part)

10. Most unusual area affected?
Scalp

[dwpierce]

1. Age
45

2. Gender
M

3. Race
Caucasian white

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

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
A cold

6. Do you have any Anxiety or OCD disorders?
no, but I think I do now

7. Any other medical conditions that may be connected to BFS?
just got dx for rsl

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

9. Body region most affected?
Insteps,calves,eyes,hand,thighs,face

10. Most unusual area affected?
finger movement always drives me to the roof

[fastpage]

This might be useful if there are enough answers. Thought I would join in since there seems to be renewed interest.

1. Age 53
2. Caucasian
3. Male
4. 7 weeks since I noticed twitching.
5. I can think of nothing that triggered twitching-except maybe a dramatic increase in exercise for a person my age. I started walking, jogging about an hour and a half 5 or 6 days a week last fall. No illness, vaccinations, etc. although I have been bitten every summer by two or three ticks for years. Have not tested for Lyme (I don't really think I have it) but may get that done. I was also taking a fairly high dose of Lipitor (40mg) which I quit a month ago. No change so far.
6. No, in fact I was pretty content and happy, until I noticed these symptoms which have caused me to become VERY anxious at times.
7. Yes, most emphatically.
8. Calves, hamstrings, shins, quads.
9. Get them pretty much everywhere now and then. Hard to say. Abdomen, maybe.

[sarah]

1. Age:53
2. Gender:F
3. Race:W
4. Length of time you have been twitching? 1 year
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) I was having more anxiety than usual
6. Do you have any Anxiety or OCD disorders? Yes, anxiety/depression for years, mostly focused on health worries.
7. Any other medical conditions that may be connected to BFS? My thyroid levels are off, going from hyper to hypo.
8. Did you go through the typical ALS scare so common on this forum? YES!!
9. Body region most affected? Calves and instep
10. Most unusual area affected? Eyebrow.

The twitches in my claves get worse after I finish my 2 mile run.