New Twitcher Hallo everyone :)

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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New Twitcher Hallo everyone :)

Postby Atropin on July 12th, 2014, 8:29 am

Hallo Everyone!!!
First of all I want to say sorry for my bad english, I´m from Germany. I´m so lucky that i´ve found this side about BFS. I went through hell the past 6 months. My Fasciculations started something about 6 Months ago. It began in my calves and feet. At that time i wasn´t really concerned, but after a few days without Remission i started searching in the Internet. it´s getting worse and it started to spread all over my Body ( even on the nose and Hand). Now you can guess what i found. "Amyotrophic Lateralsklerosis ". This two words are etched in my mind forever. I´m 21 and i thought that i have to die and that my life is over. They did an EMG after 2 Months and a clinical Inspectation. All negative. I had to quit my education as a Paramedic, because I was so conviced it is ALS. I went to a psychosomatic clinic and stayed for about 7 weeks. I also have to take Sertralin. I´m still not able to enjoy my Life , i have always in my mind that everbody ist mistaking and that it still could be ALS. I have no Weakness or spastics but I´ve read that there are some caeses of ALS with a negative EMG. And that 10% of ALS starts with Twitches without any weekness. All the time i have to look on my Hands, searching for any lack of muscles.
In Germany BFS is not very established. The Doctors ruougly know about it. They are very fast with their diagnosis of Hypochondriac disease. But i´M overwhelmed how many People have the same symptomes. First I thought im the only one. So it is very helpful to read the stuff on this board. I also have this Kind of hot spots. It´s starts twitching for a few hours then stops and then it starts again. I the last month im a litte bit in Remission. The Frequenz of twitching is decreasing. I read that it is a Alarm Signal, when there are only a few twitches per hour. Do you know something about this?
Thanks a lot for creating this
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Re: New Twitcher Hallo everyone :)

Postby Yuliasir on July 12th, 2014, 8:44 am

hi Atropin :)

in a several decades of ALS correlations search, scientists went even to correlation between sports and ALS :) but for BFS medical profession is for sure a trigger no. 1 :)
saying strictly, your doctors put you onto Hypochondirac disease becasue pure BFS means fascics only and nothing more while you defintely have also mood disorder (as most of us) in your 'backpack". So do not blame the doctors for being unwilling to diagnose you with BFS. For BFS there is no known cure, for Hypochondria it exists and works well as you can see (often people need also a therapist plus medication to relieve fears and restore criticality). Your twitches are going dow as a sign of your recovery, not as a bad sign.

(if they were a bad sign, you would also have paralysis at that time, as in ALS twitching are going down along with the complete muscular denervation)
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Re: New Twitcher Hallo everyone :)

Postby Xina535 on July 15th, 2014, 5:41 pm

Hi Atropin, welcome! I am in Germany (near Düsseldorf), and I know a few other members on here are also in Germany, so you are not alone there, or with your struggles with symptoms, fears, and frustrations.

Please feel free to send me a PM if you'd like. We are a here to help one another through this.

Alles Gute,

PS. I am American/German, and your English is very good! :)
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Re: New Twitcher Hallo everyone :)

Postby Pascal35 on August 9th, 2014, 8:57 am

Hello guys,

I am from Greece but i visit Germany very often because my wife is from Cologne... I have been also to a German neurologist in Duesseldorf about 5-6 months ago.
I requested a tongue EMG and i realized they are no so experienced... I was told that once ALS gets to the tongue there is no need for an EMG to diagnose. Maybe they are right.
At any case she examined me and because she couldn't speak proper English she called my wife and basically told her that i am crazy.
Atropin, i understand your frustration. My mind works on the same way. I am older than you. I am 36 and i have the same feelings. If you read my posts you will get a feeling of my adventures. Once i clear one spot then my fear moves to another spot of my body. I check weakness, twitches, strength in the bulbar muscles, check how my voice is sound, i even record myself reading articles just to check my articulation... I HAVE TOTALLY LOST IT!!!
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Re: New Twitcher Hallo everyone :)



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