Twitching & Worries: BFS or ALS?

[rumzcaneconundrum]

Joyce,

Your story mimicks many of us on this board. The twitches start, then we google, then we freak out, and from there all he** breaks lose.

Your symptoms sounds like BFS to me. As much as I know the twitching with ALS is due to denervation, and as long as you don't have weakness or twitching, Neuros will say it is nothing to worry about. And most of them don't even want to do an EMG. I have had two EMG from two different Neuros. They say it gives you piece of mind. Most people on this board will tell you it doesnt. It will give you relief for one day then your mind will start worrying again, as long as you have twitching.

People on this board will give you much support, we have all been there and for some of us we are still there. You have to learn to accept the twitching and deal with it on an emotional level. Because twitching only worsens the more you worry and the more you pay attention to it.

I hope this helps.

Terri

 

[SonicSonic20]

Joyce, have you read BFS in a Nutshell? I think that would put your mind at ease. You sound like the rest of us. We would all like to fiqure out why it started, but the fact that you had a virus also meets the critera for a great start into the BFS world!
I have been at it for almost 3 years and still question things. My symptoms are changing almost daily. Always something new.
I have to say that the spasms in the stomach area are so annoying. I have described them as feeling a kick when you are pregnant. I had one in my side for days, it was coming right between my ribs. Gross. I kept having my friends feel it.
I've had 2 EMG's, 2 MRI's, tons of bloodwork. Been to a rheumatologist, neurologist, endo., an orthopedic surgeon, and a foot doctor. The last neurologist said I have Benign Cramp Fasciculation Syndrome.
Hang in here with us and you will see that we are all alike.
Amy

 

[jsageurge]

You’ve found the right place. What you have described is classic BFS onset. Sudden, body-wide twitching, after a viral illness. As Amy said, make sure you read “BFS in a Nutshell.” Then re-read it every time you start to freak out.

Get ALS out of your mind ASAP. From what you describe, you have no reason whatsoever to be concerned about it. The other thing to realize is that once you start twitching with BFS, it tends to stay with you for a very long time. Don’t get freaked out by any new twitches or hot spots, unfortunately they’re to be expected. The "almost cramping" thing is also common, and many people do get full cramps.

You’ll be fine. Welcome to the forum.

 

[kurtiscool]

Hi Joyce, welcome to the board. If you search the site you'll find much reassurance. Also ready the sticky, BFS in a Nutshell.

A lot of people follow your pattern - a lot stress and/or an illness followed by some twitching, followed by googling, followed by panic because of what googling turns up.

The problem with benign fasciculations is that they are so common and not a disease by themselves, that a google won't turn up as many hits as real diseases that happen to have twitching as one of the symptoms. Unfortunately we tend to focus on the bad diseases that occur 1 in 20000 people, versus benign fasiculation which is probably everyone! Well, most people anyway. I get twitching everywhere on my body for the most part.

1. Considering your stress (which aggravates twitching), your age and sex, I'd say it's benign fasiculations. Vomiting may have strained your stomach muscles. I think it's common for muscles to twitch more after they've been used a lot.

2. I don't think there is a normal - everyone is different in the location and frequency.

3. When you would see weakness in relation to twitches in ALS is hard to answer - I've seen difference answers depending where you read. I don't think there is a difference - twitches are twitches. The thing to remember here though, is that benign fasciculation is very common, ALS is very rare. Keep repeating that.

4. Yes. I get stomach twitches too (down near my waist and just below my rib cage). I've seen people report them just above everywhere on the human body on this site (and I mean EVERYWHERE). No stomach twitching is not specifically related to ALS.

Take care and try to relax.

 

[mosciski.camryn1]

Oh Joyce...I have so been where you are now. I am sorry for the extreme and uncomfortable anxiety you are feeling...However, your story is so remarkably similar to so many on this board that I think if you take the time to read some of our posts you will feel so much better. We all started twitching, searched the net, and then lost our minds. Any neuro will tell you that that horrible A disease typically PRESENTS with weakness...the twitching, if noticed at all, is noticed later and is the result of weakness. From the details of your post it sounds like you are fine. You just have this annoying disorder like the rest of us...we are annoyed, but we are alive and fine. I have been on this forum for several months and whenever I see a new person post I think of them as coming in from the storm. They've been alone and scared and shaking out there in the threatening weather and then they are invited in, warmed, calmed, and surrounded by support and eventually sit down with the rest of us in this protected place and in turn offer comfort to those who come in after them. Take a deep breath, spend some time here browsing around, keep posting, and soon you will feel better.

 

[SuffolkBunny]

Hi Joyce,
Your account is so simalar to so many here, myself included. I am your age and started to get a few twitches from being run down also but mine was stress and lack of sleep due to work load rather than illness - a totally normal bodily reaction to either according to my doc.
THEN i googled and from then on my twitches just exploded everywhere.
The more worried I became the more the twitches came, they stopped me sleeping and eating properly and this increased them further in a vicaouse circle the more run down I became. I could not believe that this was happening to me and could not see how such strong physical sensations could not be a grave illness. Its so hard, but once you come to realise (and it takes time) that the fear from what you saw on google is creating anxiety and this is what is feeding the twitches to continue and increase you will find you calm down a little and they begin to decrease, and as they do this you begin to realise that if this was caused by something bad it would not wax and wane due to your anxiety level and that you are going to be ok.
I would see your doc for blood test to rule out mineral imbalances or thyroid issues though.
Take care of yourself,
Maisy.

 

[SuffolkBunny]

May I just add that you say "your life is always stressful so why start twitching now?" This is something I pondered also.
Well, mine is stressful too but I think I started twitching from being physicaly run down not stressed because I worked for preatty much a 48 hour straight period just prior to twitching. You were likely to be physicaly run down from the stomach bugs.This fatigue can according to my doctor cause minor twitches.
However, when we googled, the twitches changed from being just a minor physical thing to being a mental reaction to the sudden severe anxiety we felt at the thought of having an inncurable disease.
Yes, we often have stress in our busy lives but I for one know that the severe anxiety I experienced from googaling my twitches was off the scale compared to my normal everyday stress levels!