Twitching, Anxious, the usual things... Hello Twitchers!

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Twitching, Anxious, the usual things... Hello Twitchers!

Postby Lasszucken on June 8th, 2012, 3:33 am

Hi all there!

I'm another twitching soul, since about 3 or 4 month I'm twitching on a lot of locations on my body
Of course i freaked out, after I read about the the letters we all know. I did know ALS from earlier (was in a Star Gate Universe episode), tought thats it is a illness nobody would like. That was in octobe last year, after i saw the episode I forgot about it again.

In late december my right bottom cheeck twitched for about a week, it was twichting for a few hours, paused a few hours and started again. This went on for about a week and then id suddenly stopped.

Two weeks later i got a stron tingling feeling in my right lower leg and my right arm. It made me crazy, a was afraid of a stroke, but it got a little better after a few days, but never vanished. After two weeks of tingling my wife took me to the hospital, where they did a lot of tests with me, in fact i think they did every neurological test with me, but no emg, but everything else. I think they took some liters of my blood, i had tests every day for a week.
I was afraid of having MS in that time, but they didn't find anything, eveything was ok, the tingling sensations started to vanish and so i could leave the hospital after a week with the dx that it could be a somatoform dissorder.
I should try to reduce stress (if i had any) and learn some methods to relax.

At home it was tingling sometimes, but not 24h a day as at the beginning, but a few days later i got some vertigo and a noise in my right ear, tinnitus, mostly 24h a day.
The vertigo wasn't very strong, i could drive my car, walk and so on, it was mostly when watching tv or seeing things moving fast, like scrolling text in the webbrowser.

Both tinnitus und vertigo went away after about i think 4 weeks, the tingling did go awy one or the weaks earlier, and shortly after my twitching started. first the calves, but after a few days eben shoulder, feet, stomach, eyelid, forehead, neck, throut, hand, bottom, toe, etc..
After a few days a started googling and found that *beep* als again. Since then I'm anxious..

I've been to a neurologist a few weeks later, I told him about the twitches and my fear, he didnt even test me, he just look at the dx and testresults from hospital and told me, that he's sure that I'm fine, I'm 'just' anxious. Twitching alone is nothting to worry about. If i cannot stop my anxious feeling and thinking, he would help me with medics and he told me, to get help my psychologist.
He gave me a book about beeing anxious with tips what i should do to calm down. He wanted to see me again in 6 weeks.

I did quite fine about 4 or 5 weeks, when i saw fine twitches (small dents only) in my calves but could not feel them. I freaked out, as i read that als patients often did not feel them, like me. i cried, got a panic attack and immediately drove to the neurologist again. He again said, that I'm fine, i have no atrophy nor do i have any weakness, no spasms and so on, i do not have als. He gave me two medics to help me manage my fear and wanted to see me again in 6 weeks, to follow up how I'm doing with my fear.

Meantime i was to another neurologist, who did a clinical exam, strength test and so, but again no emg, as he said, he does not see any point in doing this. I'm fine, i'm only twitching, no less of strength, no atrophy and so on. He said i should try to reduce my fears an sstop thinking about als. I then said, i should come back in three months, i wold like to check me again, how I'm doing then.
I felt quite good after this and my fear was very less than before.

So im taking my medic now since 5 weeks, i feel it helps me to get rid of my panic attacks and i fear much less than earlier.

But still i have times where it takes control of me for a few hours, especially the last week, as i started to have a stronge feeling in my tongue.
Its like tingling, but not very strong, very soft, like its vibrating very very fast, but i cannot see anything. its like getting a numb tongue at the dentist, but as i said very very soft.
Sometimes it stops for an hour or two, then its back again. I can eat like normal, chewing is no priblem and i can get my tongue everywhere in my mouth where i want it, but sometimes
i have the feeling, that i have a slurry speach, but noone else recognizes it, its me. sometimes i say other words than i wanted, but thats of cource no als, could be of beeing nervous.

The rest is like most of us here:
Twitching everywhere, but not as often as it was when it started. At the beginning i had twitching every second second somewhere, mostly the calves and feets. Now its down to 1 oder 2 a minute i would say, but still sometimes it starts freaking out and twitches every second for a short time. the eyelids did twitch about 1 week, i would say 30 times a day for a minute or so. They do still twitch very often, mostly the right one, but sometimes the left one also. My twitches feel like 1-second elektroshocks where it twichted, others, big ones mostly thighs or arm like beeing hit. oder like a mild buzzing, like a shaver. I ha this on my shin for three days, 1 buzzed on second, paused for 3, buzzed one second an do on.. 24h a days, three days long.
The most annoying are my twitches on my forehead, as it very difficult to ignore them.
Then of course often stiff calves and sometimes a vibrating feeling in my leg or arm (some both legs/arms, sometimes only one) and sometimes a little pain in my muscles, mainly thighs and lower arms, for a few seconds, maybe minutes, may once or twice a day.

Well, im feeling quite fine now, the twitches are not so annoying anymore, i get used to them i think, but this *beep* feeling on my tongue makes me crazy and feeds my fear again. It feels like my tongue is weak, like its difficult to control when speaking, i dont know if its just me thinking it, i hope so.. I cannot feel anything on my tongue when eating or drinking, but of course a cannot do this all day long (well i could, but it's no good idea i think ;) )
Maybe someone of you have this same strange feeling too, maybe this would help me calm down a bit on this tongue thing...

Greetings,
Lasszucken..

P.S: Please excuse my english if it isn't any good, I'm from Germany...
Twitching since about 1st of march 2012..
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby raindog on June 8th, 2012, 4:44 am

Hi Lasszucken. You need to read thru all the posts from Chrissi, she too is from Germany and is being treated for BFS/FIBROMYALGIA / Somatoform disorder.

From what you have said in your detailed introduction Its certainly nothing like MND/ALS so the sooner you get that erased from your head the better you will feel.

I'm not saying the twitching will go away but anxiety doesn't help hyper-excitable muscles. My best advice is to, avoid sitting and focusing on all your symptoms, don't waste time self testing, instead get outside with a hobby or interest that gets you mixing with others and get back to enjoying your life with your family and friends. Oh and welcome to the forum. :wink:
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Lasszucken on June 8th, 2012, 6:07 am

Hi Raindog.

Thanks for your reply. I've allready nearly every post here in the last weeks :) I nearly almost find myself in the description from most people her, and it allways helps me to calm down reading here.

21h a day my head tells me i have nothing sinister, the other 4h it says the opposite thing. 5 weeks ago it was the other way round, so I think I've already made a big step, and from august on i will make a therapy with a psychologist, which hopefully will help me.

It's just this strange feeling on the tongue, mostly the underside, that is driving me nuts sometimes. I was just sitting in the garden and could talk about an hour without any problems to my wife and a guest, but as soon I stop talking, drinking or eating (or kissing :D ), this *beep* feeling comes usually back immediately...

Greetings,
Lasszucken
Twitching since about 1st of march 2012..
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby raindog on June 8th, 2012, 7:21 am

Lasszucken wrote:Hi Raindog.

Thanks for your reply. I've allready nearly every post here in the last weeks :) I nearly almost find myself in the description from most people her, and it allways helps me to calm down reading here.

21h a day my head tells me i have nothing sinister, the other 4h it says the opposite thing. 5 weeks ago it was the other way round, so I think I've already made a big step, and from august on i will make a therapy with a psychologist, which hopefully will help me.

It's just this strange feeling on the tongue, mostly the underside, that is driving me nuts sometimes. I was just sitting in the garden and could talk about an hour without any problems to my wife and a guest, but as soon I stop talking, drinking or eating (or kissing :D ), this *beep* feeling comes usually back immediately...

Greetings,
Lasszucken


Hey mate talking with a women for an hour, as well as drinking, eating and kissing is a certainty of nothing sinister going on 100% sure of that. Whatever sensation it is and ive had my share in the past, it will come and go and ALS does not come and go. Good luck with your therapy.
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Yuliasir on June 8th, 2012, 7:44 am

Hi,
on my own experience I had severe vertigo attacks before BFS, and that was attributed to circulatory issues in my neck (wich appeared to be transient because they were caused usually by muscle straining) or it could be also just somatic form of stress. I also have fine transient tinging in my tongue and lower face, right part mostly. It is still not harmful after few month :)
Not every neuro thinks you should be submitted to EMNG which in fact is not painless:) if your doctor considers that there is no clear indications for ENMG, he or she might be not willing to assign it.
Overall body twitching under normal bloodwork and good physical tests usually indicates stress rather than any troubling health conditions (at least stress is a big component of BFS). This stress not always means that you are worrying daily - it might be strong single case like road accident, it might be constant low sleeping quality or insufficient sleep (like when you have small children), it might be vaccine shot or infection stress - whatever causing your nerves hyperexitabiity. I found that even too much of work wich I love to do is a stress...

Psychologist shold be a good solution too (especially if he or she would fit your own approach to the life, becuase I know in theory for example that CBT is VERY efficient in case of fears but I personally never can use it, however tried, and some people can not use humanistic approaches because they are talking aboout too sensitive matters abd lack clear instructions, etc.)

wish you good luck and resolution,
regards
Yulia
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Lasszucken on June 8th, 2012, 8:34 am

Hey mate talking with a women for an hour, as well as drinking, eating and kissing is a certainty of nothing sinister going on 100% sure of that. Whatever sensation it is and ive had my share in the past, it will come and go and ALS does not come and go.
Japp, i do think the same. This the logical working part of my brain that sais to me the most time.

had severe vertigo attacks before BFS, and that was attributed to circulatory issues in my neck (wich appeared to be transient because they were caused usually by muscle straining) or it could be also just somatic form of stress. I also have fine transient tinging in my tongue and lower face, right part mostly. It is still not harmful after few month :)

I think i had a form of stress, when i had the vertigo and tinnitus, as i still was afraid of having MS, as there was still some light tingling sometimes. First after getting the last result from the last test of the liqour made me forget about ms, but that took 6 weeks until i got that one, my fault, guess i could have asked my gp before, as he said he would immediately inform me, if anything bad should show up with that last one. Stupid me, thinking he didnt call because there was something bad or he just forgot to call me.
The first neuro also said to me, that such a mild dizzyness, whre you still can walk without any problems and so on, can be a sign of beeing anxious or having a depression. Those both disappeard after i went to a to a well known dr. in ostheopathy. Could be of that that they vanished, maybe indeed some problems with my neck or my fear of ms got less. I dont know.

Psychologist shold be a good solution too (especially if he or she would fit your own approach to the life, becuase I know in theory for example that CBT is VERY efficient in case of fears but I personally never can use it, however tried, and some people can not use humanistic approaches because they are talking aboout too sensitive matters abd lack clear instructions, etc.)


I guess CBT is Cognitive Behavioral Therapy? This is exactly what my neuro told me to do as this would be the best way to get rid of my fears/panic attacks when they appear. I hope that it will help me, because I don't want to take medicine against my fear for years.

Greetings,
Lasszucken
Twitching since about 1st of march 2012..
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Yuliasir on June 8th, 2012, 8:49 am

yes it is cognitive behavioral therapy, and it will for sure help you if you are structured by nature. I know from my personal experience that CBT therapists are as much compassionate as humanistic ones, so it is not true they are just treating you like animals for getting right reflexes. CBT really changes neuronal paths in the cortex but this is the same like have boring and hard rehearslas or workouts in the gym. It takes a lot of efforts and a hell of systematic and very intense self-work ;)

Anyway if CBT would not help, there is still a pile of other methods - humanistic, holistic, body-oriented, narrative etc etc etc. For sure you could find what fits you most of all.

On my own experience, meds might still be required, but with speaking therapy they a) required not for years but just probably in specifically hard situations like breaking relationships, grown children ("empty nest syndrome"), or in case of seasonally related mood changing disorders (some anxiety disorders gets much prominent during wintertime) b) you would not be so dependent on them as if they would be taken alone, without therapy.

I for example was pretty happy without any meds until I reached my forties and my daughter had grown enough to make me worry over my usual level :)
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby chrissi on June 8th, 2012, 10:50 am

Hi Lasszucken,
well, I guess you read most of my postsa already. I additionally want you to check out the website of my doc: http://www.weiss.de/. He showed me a way to treat myself and to calm down my body. All the symptoms (vertigo, "pelzigkeit",vibrating body parts) are well known to me additionally to the pain and of course the twitching...the key is to calm your nervesand body down. Whatever made your body get into this hyperexcitable state, there are ways to help it to calm down. You are still very new to this so if you manage to get your anxiety undercontrol quickly (which is the first stepstone) you can get over this quickly. The longer your body and mind are trapped in this, the harder it gets to get rid of it. I still have my relapses though, but most of the time I am very fine.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Mike101 on June 9th, 2012, 6:00 am

Hey Lasszucken,

I think your story sounds a lot like mine, i would recommend you some meditation techniques like muscle relaxation from jacobson, but don´t think that it will help after 2 or three times, you have to do it daily for about a few months then it will start to help. On the anxiety site i would recommend you therapy, i´m in therapy for about a half year and it was a great relief. ;)

Ps: I´m from austria
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Seepi27 on June 9th, 2012, 11:20 am

Lasszucken wrote:Hi Raindog.

Thanks for your reply. I've allready nearly every post here in the last weeks :) I nearly almost find myself in the description from most people her, and it allways helps me to calm down reading here.

21h a day my head tells me i have nothing sinister, the other 4h it says the opposite thing. 5 weeks ago it was the other way round, so I think I've already made a big step, and from august on i will make a therapy with a psychologist, which hopefully will help me.

It's just this strange feeling on the tongue, mostly the underside, that is driving me nuts sometimes. I was just sitting in the garden and could talk about an hour without any problems to my wife and a guest, but as soon I stop talking, drinking or eating (or kissing :D ), this *beep* feeling comes usually back immediately...

Greetings,
Lasszucken


Hi Lasszucken. You'll find another thing that will really calm you down is talking online in the BFS chatroom: it's full of people with the same experiences as you, and the veterans there are extremely helpful. The link is: http://www.chatzy.com/Twitches-R-Us

best,
Seepi
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Lasszucken on June 13th, 2012, 9:54 am

Just wanted to thank you all for replies and yout kind welcome on the chat.

Sometimes its still difficult to handle all the twichting and other symptoms, but as i have it for 3 1/2 months now, and the fact that twitching isn't the first symptom of what I have feard, i guess I'm really fine, as I dont see any athrophy nor experience any weakness, im as strong as ever. My eyelid is also twitching everyday and I read that the eyemuscles usualy arent affected, plus my sensory symptoms like that mild tingling on the tongue etc.. i really should relax and may accept, that I (and we all here) are something special ;)

Greetings,
Passa / Lasszucken
Twitching since about 1st of march 2012..
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby johnnythejet on June 13th, 2012, 10:19 am

Lasszucken wrote:Sometimes its still difficult to handle all the twichting and other symptoms, but as i have it for 3 1/2 months now, and the fact that twitching isn't the first symptom of what I have feard, i guess I'm really fine, as I dont see any athrophy nor experience any weakness, im as strong as ever. My eyelid is also twitching everyday and I read that the eyemuscles usualy arent affected, plus my sensory symptoms like that mild tingling on the tongue etc.. i really should relax and may accept, that I (and we all here) are something special ;)

You are correct... Relax and accept the truth, because that's what it is. Glad to see you on chat as well. :)
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby Lasszucken on June 24th, 2012, 8:20 am

Today i had twitching in my thumbmuscle, when it twitched even my thumb was moving like crazy.
Don't like that spot. Left shoulder pops, knee twitches, calves still going on 24/7, 60% unfeelable twitches.
And still i kind of freak out when i see it, wish i wouldnt..
Toes dancing Lambada.

And new: my tongue twitches also, but not as often, but it seems like when its twitching i feel it tingling the same time.
Strange sensory issues in my calves, like very light electricsl feeling or pins and needles, but very very mild.

Todays no good day for me.
Twitching since about 1st of march 2012..
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby chrissi on June 24th, 2012, 10:03 am

Welcome to the wonderful world of BFS...OK, it is named after the twitches BUT there are about a *beep* of symptoms that go along with it and are at least as annoying as the fasciculations. Tingling is one of them. Well, ynd for me typically the tongue twitches are acompanied by a tingling sensation/elecrical feelings as if I was licking a battery .
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

Postby volfan on June 24th, 2012, 10:21 am

I totally have all those things. I am only 6 months into this "thing" so not too far ahead of you. The sensory issues sometimes bug me as much as, if not more than, the twitching. I get the body and limb and toe/finger jerking movements (dancing) as well. Mostly at night but sometimes during the day as well. I feel like I must look like this http://www.youtube.com/watch?v=DLOUqizemI0 to the people at work. But they already think I am a big kook and on the nutty side so they probably see it is par for the course.

While all these symptoms are very annoying (and in the spirit of full disclosure I confess that I sometimes still get a bit spooked by one or more of them), I also have to admit that I do think BFS is fascinating. The body is still a mystery despite how much we have learned about it since the big bang, garden of eden or whatever else you believe in depending on your personal values and beliefs!
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Re: Twitching, Anxious, the usual things... Hello Twitchers!

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