My face is being attacked!

Information about how to manage or reduce the severity of BFS symptoms

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My face is being attacked!

Postby Mellabella on August 21st, 2012, 8:31 am

Hi, this is my first post and what i am searching for is maybe someone, 1 person who is experiencing the same symptoms as me to reassure me that its all going to be ok. As of right now, I feel I have more in common with people on the *other forum....and its ruining my life. So heres my story:

I am 26 and my BFS started 3 years ago when I was pregnant. It came, and it went in less then a month, and was localized to my finger. Spring forward 8 months and its back with a vengnance. My arms, legs and stomach seemed to be the hot spots. That lasted for a year. This past February I noticed a little twitch on my jaw when there was a loud or unsuspecting noise. It started happening more and more. Then A few days later when I went to the dentist, I could barely hold my mouth open because my lips were "quivering" when I was trying to keep it open. Then the tongue was noticed. When I stick it out it moves like crazy, I've been reassured that thats normal. When I protrude it out of my mouth, even just a little bit... kind of like to a point, it shivers and shakes and quivers like crazy! I wasnt getting any random twitches in my tongue while it was at rest until the last month or so, but I know when it happens because it feels like I just put my tongue on a battery! And its happening all day. If I try to hold my eyes shut tight, my eyes shake and I can feel it in my noise and mouth, like everything is straining to keep my eyes closed. When I smile, my cheecks quiver. The fasciculations in my scalp and hair line go on all day. Everything on my face twitches. Along with every part of my body.

*Nuerologist visit number 1- Breif exam, didnt took at my tongue or test any facial features, mentioned that some of these are signs of AL# but he doubts it because Im so young. prescribed .5 klonopin for bedtime, ordered MRI of brain (NORMAL) and he himself did an EMG/NVC and all came back A- OK, and chalks everything up to anxiety, and does admit that i do have a strange tongue "tremor" he called it.
*Nuerologist visit number 2- 4 weeks later Euphoria from first visit wears off, come back for 2nd visit and he up's my prescruption to 1mg of klonopin at bedtime (meanwhile, Klonopin does NOTHING for my twitching, just makes me tired).

This is when I started to notice the weakening neck and constant back fasciculations. And I dont mean percieved weakness, i mean when I lay flat and pick up my head it shackes immeadiatly and I can barely get my chin to touch my chest. Also, when I turn it to either side, my whole head shackes. Sent me into complete panic mode. BFS has no weakness right?

*Nuerologist visit number 3- Second opinion from another doc.-she to did a very basic exam....didnt order another EMG because I had one 5 months ago, ordered an MRI of c-spine to check on my neck and also ordered an EEG (which I thought was ridiculous) Which showed nothing. MRI is scheduled for friday. She recommended that I keep taking the klonopin and it should eventually help. She says all my symptoms *could be related to BFS. Didnt seemed concerned with the weak neck. Recommended I start cymbalta, but I am a breastfeeding mother and I am very caustios about what I take and when, so I passed for now. She is set on all of this being anxiety.

Here is the thing about me, i am not an anxious person. But now I am, oh yes definatly. Some days I cant get out of bed, am I dying right now? I know it sounds ridiculous, but I get into bad funks, and it all started when things started happening in my face. I notice every single time I twitch, i examine my tongue daily (which has now become extremly scalloped, Im guessing because I am now clenching my jaw from anxiety). I feel like I see or feel things that wernt there before (example: When i sit down i can feel my tailbone, that never used to happen? Or did it??) To put it frankly, I am just a mess. Please, any advice is welcome. I am scared to death :(
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Re: My face is being attacked!

Postby bobajojo on August 21st, 2012, 9:15 am

Mellabella,
I can absolutely relate to what you are going through. I have almost all of the symptoms you've listed. My tongue twitches everyday. Not the kind of twitches that leave you confused if they are normal tongue movements or not. I'm talking about real twitches that are easily seen and felt but I also get plenty of tongue twitches and movements that are tiny and not felt. Lately, I've had plenty of chin and jaw twitches, cheek twitches, eyelid twitches, neck twitches, etc. Whenever I lay down in bed, my back flutters and twitches like crazy. My forearms twitch nonstop, both of them. I've had this going on for 15 months. Its benign. Yours sound the same. I hope this helps. -Matt
Over 10 billion twitches since May 2011.
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Re: My face is being attacked!

Postby Yuliasir on August 21st, 2012, 10:05 am

I can tell you that I feel my tailbone sometimes. it is aching usually without any good reason for day or two, then things come back. I believe ti is due to hormonal shifts in a month or year, when pelvic ligamenst become more or less tight.

I would say also that being a mother of 2 -2.5 years old baby is a stress. whatever nice and quite he or she is - the baby disturbs your night sleep, takes all your attention during the day, etc.
BFS is a STRESS and anxiety disease. If you do not have 'enough' anxiety, you still have stress.

I do not have shaking neck but I have 1) shaking legs (when I am nervous or just tired) and 2) shaking fingers - also when I am tired, nervous and when my fingers are loaded (like bearing a pack of goods from the grocery). They shake so wild that I can not tell you how strange it is looking. then they become quiet again. I assume that with your daily excercises related to tongue putting out, being examined here and there... you might strain your neck enough to get it shaky when laying down.

Until you are able to hold it straight when sitting or staying - you are fine.

same for your lips. BFS causes sudden quivering of ANY muscle, it comes and goes away, and should it be ALS, as your easyminded doctor told to you, you would not be able to speak clearly and eat normally. That stretching tremor is so common in BFS...

Matt, who was first fellow to reply to you, said recently that his tongue was also scalloped - until he did not started to wear jaw device during the night to avoid unintentional clenching - and according to his report 'scallops' had vanished in a week or so.
Please remember that BFS starts from subtle twitching and then anxiety makes the rest (like in the song of dead man chest!) - the victim goest down spiralling into more and more veird symptomes until...until he or she would not recognize it is not dealdy disease but just anxiety, disturbed sleep and lont term ignored stress.

look how many young mothers we have here - and all of them are among the most suffering, on my point of view...
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Re: My face is being attacked!

Postby Mellabella on August 21st, 2012, 11:13 am

Thanks for the replies guys. The weak neck is just really really scaring me the most right now. When I am sitting up, I can only turn my head enough to where my chin sits on my shoulder, any further then that and it shakes very badly. In all the research I have done, everyone has said there is no weakness in BFS, so what do I hope for, maybe I have something different going on in my neck thats unrelated? Its just so frustrating! And the tongue twitching is just getting worse. I have pretty much given up looking at it in the mirror because I dont need do, i can just feel it all day, whats the point of looking and freaking myself out, since everytime I do look I question every single dent and ridge? But yes, the good news is I swallow and speak fine, those 2 shreds of hope i hold onto every day. but my idiotic self has trolled the *other forums enough to know that some people didnt have trouble swallowing or speaking for quite some time. I am thankful for your replies, I cant wait for the c spine mri on friday, although Im not sure what to hope for?
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Re: My face is being attacked!

Postby johnnythejet on August 21st, 2012, 12:23 pm

Mellabella wrote:Hi, this is my first post and what i am searching for is maybe someone, 1 person who is experiencing the same symptoms as me to reassure me that its all going to be ok. As of right now, I feel I have more in common with people on the *other forum....and its ruining my life.

I've had this stuff for 7 years and am very familiar (as we all are) with our symptoms and how they differ from "the other". I can tell you that your "feeling" of having more in common with people on the other forum is waaaaaay off base. I read your story and your symptoms are clearly not due to ALS. None of it is concerning, not even what you describe as a weak neck....your neuro was also not concerned because there is no reason to be.
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Re: My face is being attacked!

Postby Mellabella on August 21st, 2012, 3:59 pm

@johnny, thanks for the PM, I have created an account :)
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Re: My face is being attacked!

Postby Missi on August 21st, 2012, 4:22 pm

I had that SAME NECK WEAKNESS!! And it lasted for like a month and one day it was SO bad that when I was at work talking to a customer I had to rest my chin on my hand because I could barely hold it up, same shaky feeling, everything you're saying. It just went away.. now my leg feel's funny and I can "feel my leg" almost all the time. It seems to get tired easily but after rest it's much better but the same thing over & over. I can't forget it because I'm so sensitive to my neck I was always complaining about it... I have wondered if I have MG because of it.. I also have a droopy eyelid that started a few years ago as well. Going to the Dr tomorrow so I will tell them about my leg.. has been a crappy leg since February if I can remember right... However, I can STILL do 80 one legged calf lifts though! I do them everyday but oh the burn afterwards!! :( Watch, your neck will get better. My face has been twitching today too for some reason. I swear earlier it was my whole left cheek that twitched!!
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Re: My face is being attacked!

Postby Mellabella on August 22nd, 2012, 12:23 pm

Missi, I just respnded to your PM :)


I also wanted to mention that i had about 100 blood tests and all came back fine ....

also another symptom I have is chattering teeth. Its so annoying!
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Re: My face is being attacked!

Postby twitcherHH on August 22nd, 2012, 1:07 pm

I had this neck weakness and shaking episode, too. About seven years ago, when my twitching was still minimal. And about that turning your neck and resting your chin on your shoulder: You can turn your head even further!? Are you even human? ;-)
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Re: My face is being attacked!

Postby Yuliasir on August 23rd, 2012, 2:24 am

twitcherHH wrote:I had this neck weakness and shaking episode, too. About seven years ago, when my twitching was still minimal. And about that turning your neck and resting your chin on your shoulder: You can turn your head even further!? Are you even human? ;-)


that is what I actually thought too!
by the way, such huge mobility might be related to overall hypermobility - which is stronly assosiated with twitches!
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Re: My face is being attacked!

Postby Mellabella on August 23rd, 2012, 2:46 pm

Hahaha I am human I swear!!
You guys cant rest your head on your shoulders? Either way...my head used to not bobble around when I would look over my shoulder. Now it does
:( mri tomorrow, wish me luck :)
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Re: My face is being attacked!

Postby Yuliasir on August 23rd, 2012, 11:59 pm

Guys and girls too :) good luck for MRI!
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Re: My face is being attacked!

Postby mike fla on August 24th, 2012, 12:06 am

This BFS stuff is really strange. Many of us have had the sensations that you have and they come and go at the weirdest time. For instance, the other day I was jogging and all of a sudden my left calf felt someone took a knife to it. Both of my calves then started twitching like hot cakes. It was so bad that I could barely walk. Since then the stiffness has come and gone. Sometimes I am walking around and it feels like a ran a marathon and then others I hardly notice a thing. Then today my calves felt fine but I got this strong pain in my jaw right next to my ear. Its the nature of BFS. I bet that your current neck issues go away but another strange problem might pop up. It can really suck because you finally convince yourself that one symptom is not the end of the world and something else pops up in its place to freak you out all over again. I think that is why we need to learn that despite the changing nature of our symptoms it is still caused by the same old BFS and accept that we are going to be okay.

I also agree with what Yulie said. We sometimes confuse anxiety and stress. If you think about it anxiety is a form of stress. Even if you are not anxious but have a large amount of stress in your life than your body will react in the same way. Thus, maybe you did not start into this as a person with health anxiety, but certainly with a young child that involves a large amount of stress? The stress becomes one of the factors that results in BFS. Then BFS creates new anxiety and hightened stress on an emotional and a physical level. So now you are stuck trying to deal with this new anxiety and whatever other stress factors are affecting you.
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Re: My face is being attacked!

Postby Snoookie on August 28th, 2012, 10:41 am

Hiya can also relate, my tongue twitches daily since March and def feel them .....similar to Matt........the tongue face head is the region i freak about most........also get daily twitches tho not constant mainly to calves, back, derriere lol lower tum upper arms .....see a neuro recently he looked at my tongue and i showed him a video of it he was not concerned.... :)
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Re: My face is being attacked!

Postby SuziQ on August 28th, 2012, 6:22 pm

Weakness and shakiness are two entirely different things.

BFS often causes tremors and ratcheting-type sensations. I used to post on this forum all the time that I was a bobble-head. :lol: That didn't mean my neck was clinically "weak," it only meant that I had tremors.

Besides that, there IS weakness with BFS. It is merely called perceived weakness because it cannot be detected on clinical exam. If a neuro does strength testing and doesn't find anything "grossly" abnormal, that doesn't mean your symptoms aren't real to you. It only means that the weakness you are feeling is not clinically significant. Weakness in association with **S or NMD causes profound disability and functional deficit, rather dramatically and immediately in the disease process. You would quickly be unable to swallow, chew, or speak if you had **S. Besides that, you are way too young.

I often felt that my head was too heavy for my neck to hold, and I would easily fatigue. This is all quite normal for BFS. It's a lot easier to cope with when we understand that it is truly benign.

Blessings,
Sue
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