Weird, weird, weird ...

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Re: Weird, weird, weird ...

Postby 6t5frlane on January 13th, 2014, 10:56 am

Have the sucking in thing on my left hand right now. Top of the hand twitches ( sucks in ) and middle finger moved right then goes back...sucks for sure
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Re: Weird, weird, weird ...

Postby will97 on January 13th, 2014, 4:42 pm

I guess that its everything put together that is getting to me ... the deep twitches, the tremors, the pain it causes, the burning sensation ... etc... its as I could feel my muscles are really under pressure or feels as if they were getting weaker ... I really hope that it will pass soon ... cant bear this crap much longer:(
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Re: Weird, weird, weird ...

Postby Little Lost on January 13th, 2014, 6:22 pm

Hi

I have had these "suck in and hold" twitches you are talking about in my left calf and to a lesser extent in my right thigh. They are absolutley horrible and you cant miss them or ignore them. I am quite skinny and once I had on tight black trousers sitting crossed legged in hairdressers. " Your leg is moving on its own she told me, how do you do that ?"...(no *beep* shut up and do my hair). Oh there it goes again, are you kind of sucking it in and holding it in that position, are you controlling that then, thats so good, ( yes I just love it, sorry I cant do it in time to music for you, now do my hair and let me escape ) " !

Back in March 2012 I went to my consultant neurologist and showed him it actually happening. Right in front of him my calf sucked in and held itself there in suspended animation before releasing out slowly. He laughed and told me that large muscles can have large dramatic twitches. He also said these type tend to be more associated with cramping. He said that substained contraction was nothing to worry about, then shocked me by saying watch this I will make it do it again for you. He then touched it a bit and off it went again. He had a lot of clinical experience with ALS/MND and was not in the least concerned. He said he always suspects ALS by the clinical exam alone, if that is clean he would never order an EMG. Told me to go away and learn to accept these fasciculations as part of who I am. I hadn't had an EMG at this point. ( Of course I didn't listen to him and went on to have 3 EMGs in the next year and a half, all showed fasciculations but nothing else)

I had these type of fasciculations for about 6 months in my calf, and seemed to be present with the internal vibrations lots of people get. Eventually it slowed down, they began to fade away . I am going through the phase of lots of smaller twitches at present in various everchanging locations and internal vibrations constant ( 7 seconds on and 3 seconds off constant 24/7). (The cyclic rhythm of the vibrations puzzle me, i.e. I though fasciculations were randome not regular and cyclic....but no matter. I will always remember the " suck in ones you describe though" I was sure something so dramatic could not be benign. My leg was acting like it was possessed, like I have an alien breathing in there.

Keep strong

Helen xxx
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Re: Weird, weird, weird ...

Postby Little Lost on January 13th, 2014, 6:43 pm

ps ....... maybe I do have an alien in my leg...better than " that other thing " we all talk about.

Up here in Scotland we have 2 major football teams that get huge press coverage. One of the ex dutch players who is 38 has been diagnosed with ALS, he was talking fine 4 months ago and now the interviews are done with subtitles. Makes me ashamed of myself that I have to leave the room when he is on the TV. This fear thing is not good for us, it changes us. My neurologist says not all ALS patients die only able to move a cheek muscle for communication. Many find a peace and can communicate needs even at end stages. The disease is huge for people with health anxiety because it signifies a total loss of control, which is most anxious peoples biggest fear.... but I over simplify.

Keep strong. I am still going 2 years and 4 months into this, big suck in fasciculations in all.

Helen xxx
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Re: Weird, weird, weird ...

Postby will97 on January 14th, 2014, 9:03 am

Hi Helen, thanks for the message. I appreciate that you took the time to share your story ... I could imagine the hair dresser bit as something similar also happeend to me.

I sent you a PM, did you receive it?

Thanks to everyone for sharing your thoughts, stories and for the encouragements.

Will
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Re: Weird, weird, weird ...

Postby Link on February 20th, 2014, 7:58 pm

I've been getting the exact same thing. They are what I call "mini cramps".

It's exactly like you said, the muscle sucks in for a few seconds then blows back out. I recently got a stronger one that actually hurt and now I fear that this is the beginning of true, full blown camps rearing their ugly head :(

I hope not.
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