New to forum - potential BFS sufferer

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New to forum - potential BFS sufferer

Postby TJNDND on November 18th, 2013, 9:05 am

Hi All,

Just want to say "hello" and a thanks for this forum - it has a lot of great information from what I've read through thus far.

Here's my story:

I'm a 34 year old male who "I think" has had muscle twitches/spasms for a pretty significant period of time. I've always had an "on and off again" right eyelid twitch - and I can recall other instances of biceps twitching, etc in the past. I don't know how long I've had them, if I've always had them, or if I've just recently become more "aware" of how often they happen.

I started reading recently about a possible connection between ALS and concussions. I've had 3-4 concussions over my lifetime, the last one happening 12 years ago appx. After reading about this possible connection, I started to become fixated and "ultra-aware" of the twitches throughout my body. I have been having them on my left bicep area (between the bicep and elbow), left shoulder, left pectoral, and also in both thighs, right shoulder/bicep, lower back, and occassionally calves/butt. I also continue to have the right upper eyelid twitch which never seems to go away completely. The twitchs are "widespread" but they tend to happen in the same isolated spots on different body parts - my left bicep/shoulder has had probably 30-40% of the twitches.

Additionally, I've been noticing a very very slight "trembling" of my left bicep and chest area. So slight, I almost need to hold a light up to it in the dark to see the shadow because it's almost unnoticable. I don't know if everyone "trembles" to a slight degree when they are trying to hold perfectly still, but I'm scared this is a "fine" fasiculation associated with ALS.

I don't have any noticable weakness in any area, or fatigue. The twitches also seem to "jump" around, and get better (or at least unnoticable) when I am moving around or using the muscles. Some days the bicep one is bad, other times the thigh ones go crazy. They never seem to happen at the same time however.

I do have a history of "over-reacting" to "symptoms" and excessive health anxiety/worry. I also don't get a lot of good sleep (I wake up multiple times throughout the night) due to my racing mind, and my diet probably isn't the best. This is taking quality time and energy away from my wife and 11 month old daugther, and I'm terrifed at the prospects of ALS, or the onset that an "ALS-like" disease is brewing - due to reading that a few people's initial symptoms were an odd "twitching" (Steve Gleason). I'm considering scheduling an appt. with a neurologist, however I feel dumb going against my primary care doctor's opinion that this is related to stress and anxiety about my job, history of anxiety, and constant fixation on ALS. I'm also worried that my insurance won't cover it if I get an unwarranted EMG/neuro reflex exam, etc. Everyone unfortunately just wants to "chalk it up to stress" and thinks I'm crazxy - but it's hard to just "forget about it" when you start to twitch again.

Thanks for reading my story and any feedback and/or advice is greatly appreciated. Thanks for the oppotunity and forum to vent!
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Re: New to forum - potential BFS sufferer

Postby Yuliasir on November 18th, 2013, 9:51 am

Hi and welcome,
as far as I remember, certain correlation between concussions and ALS was probably driven from the fact that among other athletes, boxers and soccer and football players are most frequent victims of ALS-like disorder, but you must admit that amount of concussions suffered by those guys is probably 1 per month or even 1 per week, and they are generally failrly hit in their heads daily... So if you had your last concussion 12 years ago, I think it is not a risk factor at all.
However 11 month old baby is a BFS risk factor for sure. Change of all habits, lack of sleep, natural worry for the little creature - not only mothers suffer but dads too.

Of course you may visit a neuro to check your physical status (it is always useful) but please consider that people who were cured of BFS never got that cure form neuros, becasue neuros do not have right protocols for treating anxiety and stress (it is just not their branch of medicine).
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Re: New to forum - potential BFS sufferer

Postby Anxious guy on November 18th, 2013, 9:59 am

Hey,

Your the same age as me and I have had twitching for years to varying degrees, I had a chin twitch for a few months back 4 years ago and random body ones on and off through the years but I just ignore them.
Recently my tongue started and has been persistent for 9 weeks at least but I felt it doing it now and again over the past 5 months but it only done it once in a while so I ignored it, its a tiny little indent type twitch right on the tip aggravated by talking or moving it certain ways and quite often it wont twitch at all if I haven't been speaking etc .
I had an EMG and Nerve conduction tests last week and the doctor doing the test I have normal results, he tested every limb and tested different muscle groups, I also should add that my clinical test by my neurologist was OK and he said I didn't need an EMG but I have health anxiety and requested it for peace of mind as I needed as much reassurance as possible.
I had the eye one about 4/5 months ago and its stayed for 2 weeks solid ... I had one in my tricep for 9/10 days too, my calves constantly twitch.. I see them and cant feel them and I see and feel them..
It sounds like your similar to me and a lot of others on this site, my neurologist said it s BFS and my GP said the same....
I say this a lot but A common trait with a lot of us is Health Anxiety or general anxiety also a good few people seem to notice this after a child is born or a big change in routine or something stressful happens or even just lack of sleep !!
I am not a doctor but if you know you have been or have a tendency to twitch over the years then I would try not to worry about it as your still OK now with no physical change in your health, worrying may and probably will amplify the frequency of your twitching and your awareness to slight changes you would previously just ignored, so it really is best not to worry and break that cycle as BFS / twitching is fueled by anxiety and worry.
I just coming out of a pretty rough time of it and I can assure you that when I was fixating on it and worrying so much that I felt sick and couldn't eat and got really stressed, anxious and scared about everything.... My wife, my children etc ...
I hope I can help you relax before you get to that place as its terrible and difficult to break out of.... I am new here but there are loads of other experienced BFS people here that will be able to reassure you and help you through this... They helped and continue to help me !!
Good luck !
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Re: New to forum - potential BFS sufferer

Postby MarioMangler on November 18th, 2013, 11:23 am

Yuliasir wrote:as far as I remember, certain correlation between concussions and ALS was probably driven from the fact that among other athletes, boxers and soccer and football players are most frequent victims of ALS-like disorder, but you must admit that amount of concussions suffered by those guys is probably 1 per month or even 1 per week, and they are generally failrly hit in their heads daily...




Yep, if you are talking somebody like Lou Gehrig, he was notorious for being knocked out silly pretty much on a monthly basis. He was famous for running head first into walls, or playing football without a helmet and smashing into things. The amount of brain damage he sustained over his short lifetime was probably pretty substantial. So what you did and what he did are probably not even in the same ballpark. And like Yuliasir pointed out, most people these days don't think Lou Gehrig had ALS anyway. He probably just had repeated brain damage that over the years built up and in some way mimicked ALS.
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: New to forum - potential BFS sufferer

Postby johnnythejet on November 18th, 2013, 1:57 pm

Everything you’ve experienced paints a picture of BFS and points completely away from ALS or anything sinister. Even in some of the more odd ALS cases (I’m very familiar with Gleason’s case), what you and I have experienced is NOTHING like those cases when you get into the details….trust me on that. And the nice thing about BFS, is that by its very nature we are certain there is nothing “brewing” behind the scenes. BFS is harmless, and can never become something otherwise. Stop obsessing about concussions or any other potential link to ALS, because all those ideas are irrelevant when considering your symptom pattern. What you’ve presented is no more likely to be ALS than a runny nose as far as I’m concerned.
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Re: New to forum - potential BFS sufferer

Postby emmie.s on November 18th, 2013, 2:29 pm

TJNDND wrote:I don't have any noticable weakness in any area, or fatigue. The twitches also seem to "jump" around, and get better (or at least unnoticable) when I am moving around or using the muscles. Some days the bicep one is bad, other times the thigh ones go crazy. They never seem to happen at the same time however.


sounds 100% like BFS to me. As for the trembles, they could just be slight twitches. As far as I know, trembling in your chest is not an ALS symptom. It usually doesn't present in your chest like that, before attacking your extremities (toes, hands) first.

I don't think it has anything to do with stress, but stress and anxiety make the twitches worse. If anxiety over this is wreaking havoc on your life, I would shell out the money to see a neuro for your peace of mind, so you can accept your benign condition and get on with life.
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Re: New to forum - potential BFS sufferer

Postby TJNDND on November 28th, 2013, 2:10 pm

So it's not odd or indicative of something other than BFS that I seem to have a constant twitch in my left bicep? It's somewhat fine and unnoticeable - but other times it is a full fledged spasm. My right eyelid is twitches frequently also, but my bicep twitches almost 24/7 at rest.

The fact that it seems to be more "concentrated" to my left bicep is what has me terrified. I do get "some" twitches in the thighs and butt, but my left bicep is always going....

Thanks again for the feedback.
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Re: New to forum - potential BFS sufferer

Postby Anxious guy on November 28th, 2013, 3:08 pm

Dude read some of my posts... My right tricep is slowly twitching up and down 24/7 mostly slow and so slight I can just about feel and others its easy to feel ! It's like twitch up hold 1 second and down again ... Constant ! It was there for 10 days at least then went away for over a week and now it's back for 6 days and counting !
I twitch from head to toe... If I blink hard my eyes twitch, my tongue twitches all the time on the tip and the odd random zap here and there too !!
I get constant calf twitching, some are so slight I feel like a crawly feeling but I look and it's small twitches !
I get random twitching all over !
My first hot spot was 4 years ago and that was my chin and it lasted months !
Are you normal ? Are the 4000 + members here normal ... I say we are normal twitchers ! I've been told no one has got anything other than BFS in the history of the site and that's good enough for me !

I know it's hard ... I was an emotional wreck just weeks ago but I'm getting better with the support on this forum and fb page !!

Stick around and get better :-)
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Re: New to forum - potential BFS sufferer

Postby RGB on November 28th, 2013, 4:31 pm

From a peer-reviewed journal (and it is a good quality study)...

No association was observed for severe head injury > 3 years before ALS diagnosis, nor was ALS associated with subtypes of head injury or repeated injuries occurring > 3 years before diagnosis.


... I won't post the link (not difficult to find if you want to, but the above tells you all you need to know and some people are able to find something to worry about in any ALS study!).

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My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: New to forum - potential BFS sufferer

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