Living with BFS: A Story

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BoneDog

Well-known member
HI MY NAME IS TheTrex

I AM A 29 YEAR OLD FEMALE, I HAVE HAD MUSCLE FASCICULATIONS FOR A YEAR.

I HAVE BRISK KNEE REFLEXES

I HAVE SEEN THREE NEUROLOGIST 2 WHO DIAGNOSED ME WITH BFS.

IT STARTED IN MY BICEP, A STRONG TWITCH THAT MOVED THE MUSCLE, I HAD LIFTED A HEAVY BOX AND IT HAPPENED AFTER.

I LOOKED UP TWITCH ON LINE AND THAT WAS ALL SHE WROTE.

I GOT SO SCARED I BEGAN TO TWITCH EVERYWHERE.

I HAVE HAD 4 EMGS, ARM AT 4 MONTHS, LEGS AT 7 MONTHS, TONGUE AT 10 MONTHS.

ALL WERE NEGATIVE EXCEPT FOR ONE LOCALIZED TWITCH IN THE THIGH. I AM STILL CONVINCED I HAVE ALS

HELP!!!!!!
 
If you have been twitching for a year with clean EMG's and no weakness, believe me, you do not have ALS

Please read through the posts on this entire forum. You will see so many others here with the same symptoms, and none of us have ALS!

I know it sucks not knowing WHY we twitch, but you have to believe that this is something that is BENIGN! Worrying won't get you anywhere, and it will more likely make things worse!

You have found a great forum for support and advise. Please feel free to come here often. It's a great place to vent, ask questions, and share experiences and thoughts.


Welcome to the wonderful world of BFS :rolleyes:

Wishing you peace!

Kim
 
Hi Kerri

I've been twitching for almost 6 months. It's crazy how I now define myself as 39 and twitching for 6 months. Mine started out of the blue also. Just all of a sudden my body started going popcorn crazy. I also have brisk reflexes. I have a clean emg also.

I also get the what if's whirling in my brain too. Being a member of this unique group seems to help my fears, especially when I'm riding the ALSF(ALS fear) merry-go-round.

Some days are better than others with the twitching. I still haven't figured that one out. My feet are my worst area. It's hard to accept something no one has an answer for but we have to stick together here and believe we DON'T have ALS. Just typing those three letters make me tremble. The only thing we have to hold onto is our neuro's say we don't have it.

Let's both believe, Okay?

Renee :)
 
You case is so obviously NOT ALS that it is not really necessary to write you a whole document explaining WHY. Good grief, it is obviously not ALS.

RareAir
 
Hey Dogbone...

She's just frightned....no need to jump on her case! We've all faced that same fear, otherwise we wouldn't be members of this forum.
Peace, Jen
 
RareAir,
I have to agree with Kim here. We don't need the "good grief" charlie brown attitude here. I bet you were just as concerned as Kerri at one time.

Kerri you post any concerns you have here and these good people will try to answer you as best as they can.

Renee :)
 
:LOL:
I would like to thank all of you for your comments, even the good grief ones, you guys are great. I will try to stop worrying, but I will continue to come back, it just makes me feel better, I am not crazy others suffer with the same crap!!!!!


Thanks,

Kerri
 

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