My twitching is getting far worse

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chris_uk

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Hi all

I have been twitching now non stop in my calfs for 9 weeks, and its getting worse, here is a link to a video i put of if on YouTube

301 Moved Permanently

My twitches are also now getting painful. i get a painful twitch at least ever few minutes, I just dont think that this amount of twitching can be benign and its scaring the life out of me.

My Neuro appointment is not until 18th November and i am counting the days.

After viewing this video does anyone have any comments? not really sure what i am asking but i just had to show you it all

Thanks

Chris :cry:
 

chris_uk

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i take it that the fact no one has says anythimg means they have not see this before?

its not good is it? :x

chris
 

Al

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Sure, seen it before. You have fasciculations, from what I don't know. I'm no Neuro. 9 weeks of twitching is no big deal. Wait until you see the Neuro before getting panicky.

AL.
 

Al

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It's usually quiet around here on weekends. Those of us WITH ALS try to have some fun rather than hanging out here. And on that note, my company has arrived. See ya later.

AL.
 

broodjeaapspeciaal

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Sure, seen it before. You have fasciculations, from what I don't know. I'm no Neuro. 9 weeks of twitching is no big deal. Wait until you see the Neuro before getting panicky.

AL.

I try to think about it in the same way ; i have been twitching for almost 3 months now and i have no real weakness, only perceptional which gets worse after weird strenght tests.
 

chris_uk

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ofcourse i know what ur saying but you have to admit my twitching does not look good
 

sdsyd

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Chris-

Thats what mine looks like as well, only on different areas. There is no one on this board than can tell you what the cause of them is, but if you're wondering- INDEED they are fasciculations! They are ANNOYING as heck, but we can be very thankful that they are not painful. I have painful spasms/cramps and more forceful unintenional jerks occassionally, but the fasciculations are never painful.

I haven't read ny of your other posts to see if you have weakness and atrophy,etc. etc. But, I have a friend with a horrible familiar tremor in both hands. It is benign. She does not have any other symptoms and it is is quite obvious to see since it is in her hands, but she just goes about her day like any other person. She has lived with it since she was very young.

Cindy
 

jennibf

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Yep, that's twitching. I have it, most everyone on here has it. I am not diagnosed with ALS and neither are several others on here. Those could very well be benign. Have you had thorough bloodwork? Deficiencies can cause that. Definitely don't panic.
 

sdsyd

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another note Chris: Nov. 18th is just around the corner! My follow-ups are every 3 months- and the ALS/MDA clinic I am waiting to get into doesn't have an opening until January. TRY to be patient and TRY not to focus on them. I know it is difficult. When my first twitch started in my thumb I used to LAY on it and do everything to get it to stop.

Try yelling at them.

Admit to yourself " Yeah- I have fasciculations- SO WHAT!"

Try to remind yourself about FACTS. Anything you can NOT argue with if the anxiety gets too intense. Even stupid things. I'm serious- it helps. My shirt is grey. Today is Saturday. My name is Chris. My phone number is---- You can go on like this until the anxiety remits.


Cindy
 

hopingforcure

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Yep fasics. they are just the strangest buggers we all agree.. I think that without atrophy and weakness, they can just as easily be benign as malignant. Your appt. is really not that far away, and the emg. will tell more of the type of fasics they are, and what they may be coming from. Relax, could be simple twitiches, could be coming from something else, lot's of possibilites.
 

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Hi Chris,
I sent you a PM as well . . .
Just watched your leg on U-Tube. Whoa. Very disturbing, and yes very familiar. I laid in bed one night and watched in utter horror as I had "big bangers" one after another that believe it or not not were so strong my whole calf was moving back and forth. It was like a scary movie. It stopped after a few minutes and then my feet started bubbling. I have to admit that I too have yelled at them (as dumb as that now sounds..."JUST STOP!" YOU"RE DRIVING ME CRAZY!" I guess the day they talk back I'll know it's time for a jacket that only buckles in the back :) ) I've also tried hitting them, but nothing stops it.

I feel great empathy for you, you know that. And Cindy and the rest of folks are right (although it can be easier said than done, I know) TRY not to focus on them so very much.....as in filming your leg and putting it on YouTube . . .take a bit of comfort in that what you're seeing and experiencing are indeed "normal" (did I just say normal? LOL) twitches and yours look similar to what I'm having too.

Your smiley was crying, I hope you're not really crying right now. Try as much as you can to take your mind off of it, I find mine seem to stop (or at least I can't feel them) when I'm moving around. Go for a walk, talk on the phone to a friend, get engrossed in a good movie or book, something.

It's late here so me and my twiches are off to bed :)
((((Suzann)))))
 

chris_uk

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Things have jut got worse, it 7am here and i have been awake since 5am with the pain that these twitches are causing me now. its been like this for 2 days, i am off to accident and emergency as i keep getting really bad painful twitches every minute or so.

Dont know what they can do but have to try something as this is not right

Chris
 

Spacemonkehh

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Things have jut got worse, it 7am here and i have been awake since 5am with the pain that these twitches are causing me now. its been like this for 2 days, i am off to accident and emergency as i keep getting really bad painful twitches every minute or so.

Dont know what they can do but have to try something as this is not right

Chris

Chris, your anxiety is jumping through the roof. Going to the E.R wont help that much. Infact, a whole bunch of BFS twitchers got more then 2 EMGS and they are STILL not sure if its benign or not... well, according to the EMGS they are.. ;)

anxiety destroys people, but you will learn how to control it. Trust me!

Think about this for one second. I know you are on the aboutbfs website aswell.. just think about this : One of the moderators on that website said he watched thousands if BFS twitchers come and go and NONE of them had als. Im sure there were some people who were more scaried then you and had way more twitches in a different limb. But statistically speaking because NONE had ALS. Im sure you will be all ok
 

chris_uk

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Hi again

Just got back and basically was given some tablets to calm me down and help me sleep. I was seen by a doctor not a Neuro as it was just accident and emergency i went too and so of course she did not know what was causing them and i never really expected her too. She said she wish she could tell me it was not MND but of course she couldn't.

I had been getting used to the twitching annoying as they are, its just the painful ones now that are getting to me, especially when i am in bed. They are so painful they make me sit up. It is pain that feels like its coming from the depth of my calf. It might be a spasm/cramp i dont know but its scaring me.

I know that atrophy and weakness are tell tale sings i know that.. but if you go on the official MND website it does say that cramps, spasms and twitching are all known symptoms. I can not help but be scared by what i am seeing, what i am feeling.

when i walk my calf sometimes feels sore / crampy / tender / spasm type feeling.

I am at my end with it all and broke down in front of my wife this morning, i know the next 2 weeks till my appointment will be the longest of my life. I think that the 18 November will define my life forever.

i know i am just typing gibberish now but it helps me to get all my feelings out.

I am so so so scared by all this and everyone on here has my up most respect and admiration for the way you all deal with this. I am weak, i know that now as i am crying now while writing this i just cant go on like this anymore.

Chris
 

brendapals

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Chris,

Please, please, get ahold of yourself! Life is far too short to worry yourself into some kind of frenzy!

I believe it is morning where you are, maybe you should take the pill for anxiety and get some rest. You must find something to focus on , other than twitches. Like someone before me said, try walking, showering, reading, cooking, cleaning, something please, to get your mind off of the twitches before you go nuts!

Anxiety has a creepy little way of making people very sick, so try your hardest, and I'll just bet you can do it,
take good care,
brenda
 
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