diagnosed after 8 years of twitching

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diagnosed after 8 years of twitching

Postby Mario313 on May 3rd, 2014, 11:00 pm

Hi,

New to this forum.
I was just diagnosed with BFS after 8 years of twitching, spasms, and strange feeling all over my body.
I remember the day it started like it was yesterday. I was at a party drinking a beer trying to relax, but I just did not feel right. I went home that night and twitched through to the morning. I woke up twitching and began to cry. I was so scared.
Over the next couple of months began a multi-year, arduous and expensive journey in my quest for answers.

I saw a neurologist for a few years. She sucked. She told me I had tremors and fasciculations, but with no explanation as to why. She poked me, shocked me, put me on different pills with little or no relief. She ultimately said I was depressed and needed to be on Lexapro.
I stopped seeing her after that.

I saw my regular doctor (who I still think is great), an endocrinologist, and ENT, an allergist, a psychiatrist and a therapist.
I did meditation, reiki, massage, exercise, diet (gluten free, veggie and vegan) and even prayer.
Most of the symptoms subsided over the years, but I continued to twitch, feel week and have strange pains and buzzing sensations all along.
Some days my throat felt weird, sometimes my ears would ring or throb with popping sounds. My skin would feel like it was burning or like it was cold or vibrating.
But I began to get used to it and just lived my life having been told by my endocrinologist "Well I don't see anything going on, so you're not going to die. Just relax."

Last summer I started to have some pin-prick feelings in my hands and some numbness here and there.
I was very stressed out.
Then earlier this year I slipped on the stairs and BAM!! my legs felt like jelly and my twitches came back with a vengeance.
I threw in the towel and went back to my doc. Again.
He ran more tests from MRIs and x-rays to blood work for STDs and heavy metals.
He found nothing. Again.
He said I really needed to see a neurologist and he knew who he wanted me to see.

So I meet this new neuro a couple of weeks ago.
He looks at me, asks a ton of questions, tests my strength and resistance, my balance and coordination.
I show him videos of my legs and hands twitching and he's says "Ah. I see."
He looks at all the test results I've had done, sees that everything is negative and after about 5 minutes he says "I believe you have BFS. Benign Fasciculation Syndrome."
I said "What?"
At first I had no idea what he was talking about but he explained everything.
His diagnosis covered all the bases. It seemed like he knew every single thing that was going on with me.
I suddenly felt a sense of peace because it was the closest thing I had to an answer in over 8 years.

My neuro still wants to do a battery of tests to be 100%, but he's pretty sure this is what I have.
So I've been poking around on these forums and I feel like I have finally come to a place where I can relate.
That's my story.
Say Hi if you like.
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Mario313
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Re: diagnosed after 8 years of twitching

Postby christo on May 4th, 2014, 2:03 am

Hi, welcome home :)
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Re: diagnosed after 8 years of twitching

Postby ShawnW on May 4th, 2014, 6:16 am

Welcome Mario. This place is great. Thank God I found it very early in my twitching. Everything you are describing sounds just like us. I'm sorry you suffered for so long without your answers but now you are on the road to putting this behind you.
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Re: diagnosed after 8 years of twitching

Postby Mario313 on May 6th, 2014, 11:28 pm

Thanks guys.
I'm looking forward to this place where I am understood, not judged and possibly able to help or guide others as well.
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Re: diagnosed after 8 years of twitching

Postby DoubleD on May 7th, 2014, 8:45 am

welcome. i bet your heading scared the crap out of every newbie!
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: diagnosed after 8 years of twitching

Postby garym on May 7th, 2014, 8:51 am

Hi and welcome to the club!
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Re: diagnosed after 8 years of twitching

Postby christo on May 8th, 2014, 1:34 am

welcome. i bet your heading scared the crap out of every newbie!


Well, I am no more a real newby and this heading did me something too ! :lol:
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Re: diagnosed after 8 years of twitching

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