Help, please!

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GGKK

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The twitches in my riht calf...frequently I do not feel, just see them!

I've just done a self-test: I pressed my muscle strongly (right calf)...after repeat it 10 times, my muscle starts twitching! :?:

Still worried...comments, please?
 

rose

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Your twitching, when it happens, how it feels, none of it has anything to do with danger to you or your health.

Fasciculations are not part of symptoms doctors use to diagnose ALS. Doctors make note of them, but they are not part of the criteria used to diagnose it.

ALS is a disease that causes weakness and atrophy.

I can tell you from personal experience, that I have weakness and quite visible atrophy where I've never ever noticed a fasciculation, some places I had twitching, and also have atrophy and weakness. So it does not follow that where one sees twitching , that something malignant is going on. In a person that has ALS, its part of the disease, but it doesn't mean that if you twitch you've got that disease, anymore than a person who has a bad headache has a brain tumor.

Do the very best thing you can do for your health, and stop watching for twitches, testing yourself, and reading about possible symptoms on the internet. You've been twitching a long time. You would have clinical weakness now if it was anything within the category of the MND's.

It does not seem like what people say to you when you ask for reassurance actually calm you. If your doctors can tell you you don't have ALS, and the members here have responded as well, then this is not what you need to feel less afraid. You need to change your focus to something else.

If you're unable to put this aside, if you research back through previous threads, there is one titled"first symptoms?" started by me. Within that thread, BethU added a link to a very helpful BFS support and information site. Perhaps reading and getting involved there would help you.

I understand that they are upsetting, no one is saying that they aren't. You just aren't helping yourself by allowing fear of something like this consume you.

take care, and the best of luck to you in getting through this. :)
 

chris_uk

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Rose

your such a lovely lovely lovely person....i am scared by my twitching too, but people like you are so lovely its beyond words...thank you so much for all your help.

I just had to say that

chris
 

GGKK

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Rose,

Thank you very much for your words and attention!

I know I have to put the worries out of my mind and enjoy the life...but it is hard, I am trying!

All the best for you!
 

rose

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Chris and GGKK,

I know its got to be hard. I don't think anyone who's experienced them would deny it. Maybe before the advent of the internet search bringing up ALS a person could be more oblivious and just shrug it off.

My boyfriend twitches. It started a few months ago. He never seems to notice it, but I do, I'll feel it when I'm laying against him, and think its me (most of the time it is LOL) but sometimes I know its him. He lifts weights, he runs, he's exhausted and under pressure. They don't bother him in the least. I asked him the other morning if he was able to still lift as much, run as far, was he as strong, and he said nothing had changed, he was just tired and under pressure.

He is completely dismissive of them, and I am too,. But, when I read all of these posts on the forum, and then I see his calf or upper arm move, in my mind I hear the scared voices from here. I can see why when you guys read what you read, it can reinforce your fears, no matter what someone says to calm you, because of the sheer numbers of people that believe its the beginning of something ominous.

That's why I try so hard to impress upon people to not let life pass them by, don't waste it. What if a person only has "x" amount of time to live because they're going to be in a horrific traffic accident, or victim of violent crime, or, maybe that person doesn't die, but just gets crippled, how awful it would be to reflect back on the time they had, that they never knew at the moment would soon be gone, and they'd spent their days worrying about the improbable, rather than spending it living.

that's all.

good luck, :)
 

chris_uk

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Again thanks rose, and your right ofcourse you are, one thing that i have often thought...i have been twitching like mad in my calfs now for 5 months....what sort of time line would you say (and of course i totally understand that this would just be a guess) but i wounder what sort of timeline if my twitching was ALS that i would start to see other symptoms.

Chris
 

rose

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Cris, I just don't know. My own experience started with changes and a weakening of my voice, and by time anyone saw the atrophy of the vocal cords, it had been a year.

I of course never felt any twitching there. Never had any anywhere other than my tongue and sometimes a few in my face or lips until August.

I just know that some places where I'm weak, and there is a hollowed out area of atrophy, that I never noticed or felt any sort of twitches, but then other places, I twitched, and later there was atrophy. It doesn't seem like there is a correlation, its not like there is a cause and effect.

They can co-exist ~ or not. By time I had any twitching in any arm or leg, I'd already noticed weakness.

take care, :)
 

Zaphoon

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Twitching is no big deal. Its not even part of the criteria for an ALS diagnosis. I twitch, have weakness, atrophy and gobs and gobs of cramping and spasticity (along with being self-proclaimed Twitching King, I am also proclaiming myself King Of The Spastics). I do not have ALS. Just what I have has not been named yet but I'm hobbling along my kingdoms in good cheer spreading merriment and joy along the way.

I've mentioned in an earlier post that you should try to allow your twitches to amuse you, not alarm you. It would be best if you didn't think about them at all.

If you have no progressing weakness or atrophy, consider yourself good-to-go.

GGKK, the more anxiety you have over your twitching, the worse it is likely to get (stress can make fasciculations increase).
 

awieleba

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I want to chime in on how WONDERFUl that I think Rose is! You are such a beautiful person and always answering folks or researching for them or pointing things out when you have your own things to worry about. I bet you are like that with your kids. I think I want you to adopt me! LOL......
 

Zaphoon

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Rose,

You're just a real sweetie! I wish you could adopt me, too!:lol:

Zaphoon
 

awieleba

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kim~

nice try! Not for the same reasons as me I bet?!
 

Zaphoon

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April,

Was I that obvious?
 

awieleba

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Uhmm yea, you were!

Rose~ I think we are more like sisters in age but your wisdom and spirit makes me think 'mom', not age.
 

rose

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You guys are too kind. thanks very much :) .... April, if I adopted you, would that mean that I get to hold little Grace and enjoy your boy's shenanigans? I soooo want a grandbaby! I'm a very good rocker, and I think to this day I can still probably recite Marvin K Mooney, Will You Please Go Now, and Henry's Awful Mistake, and several other kids books.
 
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