Year 6

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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Year 6

Postby paulzeee on October 1st, 2013, 1:32 am

I signed up here 6 years ago because I was afraid I was sick. In fact here is my first post

viewtopic.php?f=5&t=9087&p=65579#p65579

This is my annual visit. I come here once a year.

In that time I got married, I had 2 kids, a (now) 5 year old boy (he has autism but he's great kid), and a 3 year little girl, she is so cutie cheeks, just like her mom. I started a very successful business. I lost my dad and my favorite aunt, both were heartbreaking for me. I fulfilled a long time dream of going elk hunting, and was successful. I built a race car. I made some new friends. In fact I could sit here and talk about all the things I have done since I started having problems, but it comes down to one point.

I am still around. I still twitch, everyday. I am still strong. I chose not to let it get the best of me, and I quit looking for answers on the internet. The one neuro I saw said it was benign, good enough for me.

So just a word for all the new people, you will get through this, keep on living!

See you all next year!
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Re: Year 6

Postby shell67 on October 1st, 2013, 7:30 am

Thank you for this post! It's great to know that you are managing with your condition -- and that, in reality, you've been living large! Those of us who are new to the forum really appreciate hearing from you old-timers! I have a lot of the same symptoms you presented with and I spend far too much time worrying about whether my BFS could possibly be something more sinister. Thanks for encouraging us!
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Re: Year 6

Postby volfan on October 1st, 2013, 11:49 pm

Hi there! I have a boy with autism who turns 17 tomorrow!! Yikes - where does time go?? Appreciate someone with 6 years checking in. I'll have a whopping 2 years in December. Twitch, jerk, tremor, and all shades of everything else that goes with BFS. What a pain it is...literally! Anyway, enjoyed your post. Vicki (Volfan)
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Re: Year 6

Postby johnnythejet on October 2nd, 2013, 8:03 am

Great post. Thanks for checking in!
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Re: Year 6

Postby edado69 on October 3rd, 2013, 3:26 am

paulzeee wrote:I signed up here 6 years ago because I was afraid I was sick. In fact here is my first post

viewtopic.php?f=5&t=9087&p=65579#p65579

This is my annual visit. I come here once a year.

In that time I got married, I had 2 kids, a (now) 5 year old boy (he has autism but he's great kid), and a 3 year little girl, she is so cutie cheeks, just like her mom. I started a very successful business. I lost my dad and my favorite aunt, both were heartbreaking for me. I fulfilled a long time dream of going elk hunting, and was successful. I built a race car. I made some new friends. In fact I could sit here and talk about all the things I have done since I started having problems, but it comes down to one point.

I am still around. I still twitch, everyday. I am still strong. I chose not to let it get the best of me, and I quit looking for answers on the internet. The one neuro I saw said it was benign, good enough for me.

So just a word for all the new people, you will get through this, keep on living!

See you all next year!

Paul, you are a great guy.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Year 6

Postby fox2run on November 4th, 2013, 10:06 am

Hi Paul and the rest of you

I remember you as I am beyond 6 years myself. To all you sufferes, I can just tell you this; relax. Take it easy. Live with the "thing" in your bodies. Its not ALS but just - well - normal. Today I still do my sports, I entered politics, I look after my kids, I try to get a new wife (not that easy) and all the other stuff, one does as human. My body still twist, but I dont pay any attention to it anymore. Guess what? It just doesnt feel that annoying. Once you get cured for anxiety (I spend half a year on it with proffessionals) then the world will be like in the old days for u. Its hard work, though. Anxiety is your problem and thats a fact. Unfortunately your anxiety try to manipulate your brains even after reading this... ;-)
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Re: Year 6

Postby Anxious guy on November 4th, 2013, 11:03 am

Thanks for checking in !! Good post !!
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Re: Year 6

Postby bubbles on November 4th, 2013, 2:28 pm

oh thank you so much for your post
im new here and love reading posts like this!
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Re: Year 6

Postby billydog on December 18th, 2013, 10:46 pm

Hey there! Just read your post and thanks for checking in to let us know how u are doing! Well I'm working on year number 9 and the twitches are still here! Very annoying and frustrating but I know after all this time I'm not going to die!! There are some real bad days but as someone mentioned earlier, anxiety is a huge factor. When mine is under control my twitches are minimal, but when I'm anxious and/or stressed out then they are haywire everywhere.. One thing that has me confused is sometimes it seems like I twitch worse after certain foods or drinks but other times if I just think about them they get worse for no apparent reason.. Kinda confusing!! Do U have any recommendations on what to eat and drink? I know about cutting out caffeine, sugars, gluten, and bread, oh and chocolate. But any other advice?? Thanks again in advance!!! From a 9 yr long timer lol
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Re: Year 6

Postby edado69 on February 3rd, 2014, 8:39 am

billydog wrote:Hey there! Just read your post and thanks for checking in to let us know how u are doing! Well I'm working on year number 9 and the twitches are still here! Very annoying and frustrating but I know after all this time I'm not going to die!! There are some real bad days but as someone mentioned earlier, anxiety is a huge factor. When mine is under control my twitches are minimal, but when I'm anxious and/or stressed out then they are haywire everywhere.. One thing that has me confused is sometimes it seems like I twitch worse after certain foods or drinks but other times if I just think about them they get worse for no apparent reason.. Kinda confusing!! Do U have any recommendations on what to eat and drink? I know about cutting out caffeine, sugars, gluten, and bread, oh and chocolate. But any other advice?? Thanks again in advance!!! From a 9 yr long timer lol


I tried everything and I have no answer. Alcohol makes them worse.
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