Bad Night

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Bad Night

Postby TwitchyNate on February 20th, 2013, 8:22 am

Hi all,

OK...my freak out level is up a little. Yesterday, last night, and this morning, I have been having this pretty constant twitch right up at the hip joint on the inside next to my groin. It is a deep twitch...almost like a buzz. It will twitch off and on constantly. I've not had that before...I'm not totally freaked out because I know more stuff will come but still, I'm a little freaked. Also, I woke up this morning with my entire stomach in one big twitch. It felt as if my whole stomach area would move. So...my anxiety level is definitely up this morning. Trying not to let myself slip into crash mode.
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Re: Bad Night

Postby johnnythejet on February 20th, 2013, 8:36 am

We have BFS therefor we twitch. Why would either of these twitchy symptoms be cause for concern?
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Re: Bad Night

Postby TwitchyNate on February 20th, 2013, 8:40 am

The constant twitch around my hip joint. It just keeps going and going. I've not experienced the whole stomach area jump before. I've only experienced slight twitches in spots and some of my limbs jerking some. This was a monster twitch and my twitching has increased dramatically. Until this week, I had my twitching down pretty well and now its flaring back up. Just a little weirded out over this. Trying to stay calm...telling myself I had a clean EMG three weeks ago. That voice sometimes doesn't seem to help!
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Re: Bad Night

Postby johnnythejet on February 20th, 2013, 8:46 am

Listen to the voice. Clean clinical and EMG means no ALS, and you're symptoms don't remotely reflect that dreaded disease. lol how many REAL victims of ALS do you think go to the neuro complaining of a "monster twitch"? Zero.
Your anxiety is currently tied to the twitching and that's what you need to break. You get a new, strange twitch and anxiety spikes....why? For no reason other than its a new symptom. We already know ALS is ruled out, but you'll continue to freak out irrationally. Its the way it goes, so just try to remain reasonable and stick to the facts. Easier said than done, I realize. ;)
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Re: Bad Night

Postby TwitchyNate on February 20th, 2013, 9:00 am

Johnny,

I really appreciate you. You just don't know how much of a life-saver you particularly have been. This forum has been my sanity lately but you particularly have been a true saint. You're right...it is easier said than done. Gosh, I can comfort someone else but when it comes to myself, I cannot do it!

Here is something to laugh about (I guess). I'll bet no one else has ever done this...our state license plates have a combination of 3 sequential letters and 4 sequential numbers. Every single one I get behind is either "ALW," "ALV" or the worst one that was freaking me out the most "AJS." When you see that one from the distance, you know what it looks like. :roll: I mean, come on...how messed up am I? It isn't even the right letters! Fortunately...thank God for the letters "ZYH." I began seeing them more often and got me off my anxiety trip thinking God was trying to tell me something through state license plates. I laugh at it now because of how ridiculous I was but I didn't laugh then. I know...I'm nuts.

Hopefully, I'll sooner than later get to the point where you are an laugh about this whole thing. I'm so ready to put these dark days behind me.
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Re: Bad Night

Postby johnnythejet on February 20th, 2013, 9:10 am

No worries, I'm glad to help. This forum was a lifesaver to me many years ago and I'm simply repaying the debt I owe. Just promise to come back once a year or so down the road and check in as that's a huge comfort to newbies, as I'm sure you realize.

Funny story about the license plate. What's even funnier is how predictable this thought process is. Being around for so many years I've had the luxury of hearing/reading many, many sufferers of BFS vent and explain their issues, in addition to going through it myself. What always impresses me is not only the similarity in our myriad of symptoms, but also the consistency in our thought processes. You have no idea how many people have told me a story like yours where they stumble across symbols of the dreaded"ALS" in everyday life, as if it were a sign of things to come. So once again, you're part of the club. Congrats.
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Re: Bad Night

Postby TwitchyNate on February 20th, 2013, 9:15 am

And an honorable club it is. I won't be a stranger though I will probably drop off for a while soon to try to get myself straightened out.
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Re: Bad Night

Postby johnnythejet on February 20th, 2013, 9:17 am

TwitchyNate wrote: I will probably drop off for a while soon to try to get myself straightened out.

I recommend this. Drop off for a while if not forever. I dropped off for the better part of a year to get back on with my life.
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Re: Bad Night

Postby TwitchyNate on February 20th, 2013, 10:42 am

Ok Johnny...couple more questions...not just for my benefit but for any others who read...

1) Facial Twitching: When I smile and hold the smile for a few seconds, my cheeks and mouth will begin to shake as if the muscles are weak/tired. Is this normal? Getting a twitch over my left eyebrow now...normal?

2) I want to make sure I clarify this for myself and others...in ALS, if a muscle is twitching then it is already dead or near dead hence it would not be usable and hence one would not be able to move on his her own volition. Thus, those of us who freak out about twitching and are still able to move freely on our own without assistance regardless of any difficulty should dispell any fear at all. Correct?
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Re: Bad Night

Postby johnnythejet on February 20th, 2013, 11:04 am

TwitchyNate wrote:1) Facial Twitching: When I smile and hold the smile for a few seconds, my cheeks and mouth will begin to shake as if the muscles are weak/tired. Is this normal? Getting a twitch over my left eyebrow now...normal?

Very common and nothing to worry about (obviously). I've had all of that many times over and then some. You can use the search function in the top right corner and find probably hundreds of posts along these lines.
TwitchyNate wrote:2) I want to make sure I clarify this for myself and others...in ALS, if a muscle is twitching then it is already dead or near dead hence it would not be usable and hence one would not be able to move on his her own volition. Thus, those of us who freak out about twitching and are still able to move freely on our own without assistance regardless of any difficulty should dispell any fear at all. Correct?

I think these statements are oversimplifications, which as with many things, can be less than accurate on some levels. The thing to remember is that twitching alone is meaningless. ALS is a disease of weakness, resulting in lack of function (eg. can no longer hold a mug of coffee ever again). In addition, there are many things that further differentiate BFS from ALS making a clear distinction between the two in terms of symptom pattern. Read "BFS in a Nutshell" and other sticky's for more information.
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Re: Bad Night

Postby 6t5frlane on March 7th, 2013, 7:33 am

Just has one of the worse nights ever. Constant and I mean constant calves and toes. Like Fireworks going off. Hard to sleep but it's BFS
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Re: Bad Night

Postby jcmommie on March 7th, 2013, 11:56 am

I think BFS can be present with a healthy dose of RLS (restless leg syndrome.) I know for me, my below-the-knee symptoms start up full force in the evening when I sit to relax or at night when I am laying down. Both are benign conditions, but irritating as hell.
Just keep swimming...
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