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Fasciculations, stiffness and swallowing issues

PostPosted: October 17th, 2012, 7:39 am
by frl8caco
I just want to tell you my story (man 41) and get some feedback if I should be concerned about ALS or not.

Start of April something triggered an enormous health anxiety, and I was sure I was having different types of cancers (as there are much cancer in my wife’s family). Went to the doctors and got tested, they found nothing; this lasted until end of May. During this time my sleeping was awful.

End of May I started having enormous stiffness in neck/back.

Middle of June I started waking up once/twice every night where my whole body was a big cramp – and my whole body were tired all the time because no sleep.

End of June I started having visible fasciculation everywhere in my calves.

End of July, I was sent to nevro, all blood and spine were ok. Brain MRI showed three dark spots but none of the nevros were concerned, as this were could be found even with healthy people they said. All clinical tests were done by three nevros were fine, no weakness whatsoever. EMG showed that there were fasciculations, and I was having fasciculations when doing EMG, but everything else was normal. They were sure it was related to health anxiety and set me up with psychiatrist. Now on anti-deps.

Close to three months after tests I am still as anxious as before and still have continuous fasciculations and stiffness in calves, now I also have some in my thighs. I also get random fasciculations in thumb, eye, arm, back, lip.

I also have [swallowing issues, but only harder food. No problem with drinking and speech is fine. I also have some problems with my jaw, it sounds when eating, feels like limitations when opening mouth, and get tired easily when chewing (TMJ?).At the moment also feel very stiff in back/neck.

I am stronger than ever in the gym when it comes to lifting heavy (squats 7 repsX110 kilo, benchpress 5repsX100 kilo, calf press 10X230 kilo, shoulder press 10X60 kilo)………

But my legs and arms feel weak, and when I for example go/run my legs get stiff easily. Also, when for example painting my house my arms get stiff easily. So my stamina when working seems to be worse than before. Stiff fingers (especially in the morning) but no clumsiness.

High and ‘hard’ pulse all the time (around 80 a minute), and visible pulse on neck, arms and wrists.

The thing that worries me most is that the continuous fasciculation in calves now has spread to the thighs after a few months, anyone else had this?

All thoughts appreciated!!

Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 17th, 2012, 8:40 am
by jerry2
3 neuros exam and clean EMG (fasciculations only) is more than enough to be cleared of ALS.

And your symptoms do not match ALS as you are twitching and "stronger than ever". You can forget ALS totaly!

I also started this problem after severe cancer phobia (there are cancers everywhere in my family:-().

Spreading twitching is normal in BFS, that is the curse of action actually. Mine spread from eye and finger to all body, thumb was twitching 24/7 for weeks, couldn't sleep.

PS - You are very strong with those lifts! Remember, overdoing in the gym and running can also bring you twitches. I have ran for 18 km and my feet just were popping with twitches and still are not ok now.

I tried to be brief, I am not native English speaker so excuse my language if it is not 100% correct.

Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 17th, 2012, 9:56 am
by mwagner
You couldn't be more a perfect example of BFS. Started out with anxiety (health anxiety, like many, many of us), then you have the neurological symptoms, then you go get tested, then you doubt your diagnosis from your neuro.

You are totally fine, and I can say with almost certainty that your symptoms are related to anxiety. Especially the swallowing ones.

Hang in there. I know how awful this whole journey can be, but you are going to be okay. With a little time, you won't worry about this so much, and will go back to worrying about other health issues again :)


Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 17th, 2012, 6:14 pm
by raindog
Overcome your anxiety and learn to live in peace with your your BFS diagnosis. It will save you countless time worrying over nothing and lots of your money being payed into a Doctors bank account.

Thank me later :)

Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 18th, 2012, 1:16 pm
by chrissi
You are a textbook case of BFS. The sooner you fully accept that, the sooner you will get your life back.

Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 19th, 2012, 4:53 am
by Tobes
Stiff neck, bad sleep, fascics in calves spreading over the course of months to pretty much everywehere, muscle stiffness and perceived weakness? :shock:

Welcome to my world.

If you have anything other than BFS, then that's already two of us.

Re: Fasciculations, stiffness and swallowing issues

PostPosted: October 25th, 2012, 4:41 pm
by uber
In my opinion, it doesn't sound like you are suffering anything else other than stress/anxiety.

YOur symptoms in no way at all sound anything at all like a presentation of MND at all, I'm not sure how you got that idea in your head.

Listen to your doctors, you have had multiple checks and examinations now with no findings. Stay off the Internet, stop feeding any fears you have, do plenty of exercise, drink lots of water, eat healthy, continue with your meds, try some other methods of relaxation such as meditation/ a few weeks you will feel much much better.