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Author Topic: POLL: BFS ... please respond. I would like to see how we all relate.  (Read 644 times)

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Offline livelaughlove

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Hi Everyone I am taking a little poll, then I will post the results based upon responses. It is in regard to benign fasciculation syndrome. I would like to hypothesize the cause of it amongst all of us, what makes it worse, and what helps to make it stop some. So here it goes:
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back?
3. How long have you had BFS for?
4. Are you athletic and how many days per week do you work out?
5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
6. Are you on any SSRIs or SSNIs/etc and what are they? (zoloft, buspar, xanax, prozac, etc).
7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
8. Any diagnosed co-existing health conditions?
9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
10. When do you notice it is worse?

Just reply back with the number in front of it and your answer.
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #1 on: March 31, 2014, 06:15:10 AM »
SO here are my answers.
1. yes. Documented norovirus. Started shortly after.
2. Symptoms started I think about a month after. Folliculitis for the first time in my life (kind of looks like acne). Going down spine, running along the nerve path. Also on top of shoulders and chest. These are all high oil producing areas. I think the infection disrupted pH of my skin and allowed it to break out.
3. I've had BFS for exactly 1 year.
4. I was extremely athletic when it started. Power walking 30 minutes per day, weight lifting about 30 minutes per day. That was 5-7 days per week pretty much every day.
5. At that point in time... i was on a mostly protein type diet... lean chicken, fish, tons of vegetables. 2 servings fruit per day. Limited carbs.
6. I have been on zoloft 50 mg over 10 years. The 2 months before this started, i had tried to go off zoloft without weaning myself off, got withdrawal, went back on it, then got the norovirus and possible salmonella, then the BFS started. Zoloft can cause fasciculations. I am currently weaning down very slowly. I started last week and have had no side effects and feel better. I plan to wean down over a 6 month period.
7. Brain MRI normal. only abnormality is a little congenital defect of the veins in left temporal lobe but that would not cause full body fasciculations. Lymes negative. Creatinine Kinase, vitamin B-12, magnesium, CBC, CMP, LFTs, ANA, all negative/normal. No advice from neurology. I switched PCPs to an awesome one and she thinks it is the zoloft and to try the weaning down. No advice other than that.
8. Not diagnosed with anything other than advanced sleep phase disorder which has gotten way better this past week since weaning down on zoloft. I can get in a more dreamlike state. Zoloft can cause this. When i had an upper endoscopy and had biopsy small bowel I had lymphocytosis and crypt hyperplasia, which can mean celiac, but i am negative celiac disease. Zoloft has been linked to cause lymphocytic colitis of large intestine, so i do not see why it can't also cause it in the small intestine as well but more research needs to be done.
9. My fasiculations are never below the knees. They are mostly in my face, in my cheeks, around my mouth, my left bicep in just one spot, and my back. They can occur in other places but that is where they happen the most. WHen i eat more protein and less carbs they seem to be worse, and it feels like my cheeks are being pulled back towards my ears. It is nonstop all day long and just jumps all over the place. Since weaning down off zoloft they HAVE BECOME LESS but I am still getting them.
10. I notice my fasciculations are always worse after eating, especially when i eat meat. OF course, i get the fasciculations in both my hips for the first 15 minutes after i stop power walking but that is normal, that's not what im talking about.. I am talking about the other fasciculations, if you know what i mean.
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Offline Hypo84

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #2 on: March 31, 2014, 07:23:58 AM »
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
Nope

2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back?
Look 1 :)

3. How long have you had BFS for?
15 months

4. Are you athletic and how many days per week do you work out?
Yes...3xweek swimming, 1xweek basketball, working out at home other days of the week if I feel like it, but I always go to swimming and basketball

5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
I consume a lot of meat which is one the main sources of proteins, I also eat fruits, vegetables, pasta, very little bread...

6. Are you on any SSRIs or SSNIs/etc and what are they? (zoloft, buspar, xanax, prozac, etc).
On prozac for 3months now...20mg at first, now 30mg for the last couple of weeks...can't see any difference really :)

7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
No MRI, EMG, or test for Lymes :)

8. Any diagnosed co-existing health conditions?
I get psoriasis on my elbows sometimes. I have hiatal hernia. I had gastroduodenitis because of HelicoBacter...sometimes I get heartburn feeling, so some acidity issues probably

9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
Uhhh...When it started I had fasciculations in my left triceps for 15 days or so...then I had in many muscles...shoulder, quadriceps, elbow, I think my stomach as twitching a little, now my right calf is twitching, my lats also twitched...

10. When do you notice it is worse?
When it is bothering me :P After my initial ALS fear, I never paid too much attention to them...now when all of these twitching/MS threads started to pop up every day, it started to bother me.

That would be it ;)
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #3 on: March 31, 2014, 09:39:35 AM »
Thank u so much! I hope more people reply... It seems to me it is highest in athletic people that do high protein low carb diets...but if more people respond we can see other factors... So let's keep this thread going!
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Offline Hypo84

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #4 on: March 31, 2014, 10:06:00 AM »
My diet is not really high protein low carb...more high protein high carb currently :D Planning to reduce carbs now before summer :)
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Offline NJMom

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #5 on: March 31, 2014, 10:24:11 AM »
1. Eyelid twitching began 3 months b4 full blown BFS.  I got the same stomach virus everyone in town had, but my stomach didn't get better and the twitching/shaking etc. went CRAZY.
2. Don't recall any rash but I was really sick so I might not have noticed.
3. 8 years
4. Right b4 BFS was playing long hard tennis matches and running 5 miles multiple times a week.  Now I just exercise to stay in shape.
5. I do eat everything except gluten
6. no
7. yes.  every test (mri, emg, heart, endoscopy and colonoscopy), all negative.  I stopped gluten 3 years after BFS started and that seemed to make it go away, with occasional flares.
8, no
9. When it was bad, all day long, everywhere.  Some were small. Some were huge thumpers.  I would get a hot spot which would go for weeks.  It was bad.  And all consuming.  But it was benign.  That's the important part I guess.
10.  When I was sick or worn down it got worse.  Now that is when I flare.  As a side note, I have a teenage son.  He got the flu last year and was really sick for two weeks.  His thigh began twitching.  I took him off gluten and it stopped a few weeks later.  So this is a genetic thing with us.  He also has always had unexplained boils all over his skin.  We saw tons of docs for it and they had no answers.  Since stopping gluten a year ago he hasn't had a single boil.  Used to have five to ten at any given time.  I think the BFS is our body telling us it can't handle something, whether it be environmental, allergy or stress.
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #6 on: March 31, 2014, 10:53:49 AM »
Has your son had skin biopsy to rule out dermatitis herpatiformis? I specialize in celiac disease... Know a lot about it...
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Offline NJMom

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #7 on: March 31, 2014, 11:14:02 AM »
Has your son had skin biopsy to rule out dermatitis herpatiformis? I specialize in celiac disease... Know a lot about it...

They never tested him for that, but they also never tested him for Celiac.  His skin boils were single, and while he might have 5-10 at a time, they were distributed around his body.  They were diagnosed as folliculitis.  They could never give us a cause. 
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Offline Sunlover

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #8 on: March 31, 2014, 11:41:28 AM »
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
Nope


2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back? N/A

3. How long have you had BFS for?  On and off for years and years, more frequently again lately

4. Are you athletic and how many days per week do you work out?
More so than any other woman my age that I know personally:  aerobics 3x/week; weightlifting 2x/week; swimming in the summer


5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
I consume a minimal amount of meat, lots of pasta, hardly any bread, no fruits, hardly any vegetables and a LOT of sugar (cake, candy, ice cream)

6. Are you on any SSRIs or SSNIs/etc and what are they? No

7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
No, I don't mention anything to a doctor that would require tests like that  :dazed:  and I never worried about that because I had this problem way before Dr. Google was ever invented   ;*)
(my mom would say, "Oh that's a nerve jumping" and that would put THAT puppy to rest!)

8. Any diagnosed co-existing health conditions?
No

9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
Could be ANY part - currently it's my left eye if I sneeze or sqeeze my eye shut (several months already), behind my right knee (several days, every 15 seconds for hours, then it may stop for a while, then start again); behind left shoulder. INSIDE my left ear (that one I DID tell the doctor about and she gave me neck exercises to do!) But in the past it's been my thigh, my cheek, my tricept, my thumb, my hand...

10. When do you notice it is worse?
Sitting in bed reading (the behind the knee one)  And the inside the left ear one when I lay on it. (but if I block the ear it stops)

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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #9 on: March 31, 2014, 03:14:25 PM »
So far it seems the common denominator is this is a side effect of exercise/ muscle growth.... Let's keep this going :)))
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Offline wegngis

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #10 on: March 31, 2014, 04:15:36 PM »
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
No

2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back?
N/A, no infection

3. How long have you had BFS for?
August 2012

4. Are you athletic and how many days per week do you work out?
I don't work out much anymore due to joint pain

5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
I eat greens and vegetables, rice and nuts.  No sugar, little fruit.  No bread, no pasta.

6. Are you on any SSRIs or SSNIs/etc and what are they? (zoloft, buspar, xanax, prozac, etc).
No

7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
Spine MRI 2012.  Brain MRI ~2006.  Tested for Lyme, everything negative.  I'm told to take magnesium supplements.

8. Any diagnosed co-existing health conditions?
Atrial fibrillation, diagnosed 1994, way before all the latest stuff.

9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
Calf muscles.

10. When do you notice it is worse?
Seems random, but higher stress and missing magnesium supplements seem worse.
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

Offline Hypo84

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #11 on: March 31, 2014, 05:35:09 PM »
I've been taking Magnesium for the last week, didn't notice any positive benefits. I will continue taking it though...
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Offline wegngis

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #12 on: March 31, 2014, 05:48:27 PM »
I've been taking Magnesium for the last week, didn't notice any positive benefits. I will continue taking it though...

Took weeks for me to notice.  Also, I take 2.
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

Offline Hypo84

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #13 on: March 31, 2014, 05:51:34 PM »
How much in mg are you taking? I am taking 150mg
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Offline wegngis

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #14 on: March 31, 2014, 06:32:45 PM »
133mg, Albion Chelated Magnesium Glycinate
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

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