Worst twitching ever - Please help

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Worst twitching ever - Please help

Postby Pascal35 on November 1st, 2014, 1:15 am

Hi everyone,

You have probably read some of my posts over the last 12 months.
I have been into so many doctors and had so many EMGs and was not taken seriously anymore from anyone. The diagnose was that everything is related to stress.
Suddenly since yesterday - the last 24 hours i am dealing with the worst twitching i ever had. Left arm bicep unstoppable twitching almost continuously when my arm is at rest.
I even feel the "pain" and the tiredness of this area after hours of twitching.
Has this ever happened to any of you?
How long would it last?
Until now i only had random twitches and the worst would be a specific area for 4-5 days but NEVER so much and rapid.
Coincidentally i had an EMG which included the left bicep 1 month ago. It was clean but that period there was no twitching.
Please advice as i am in a very scary and panic mode...
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Re: Worst twitching ever - Please help

Postby RGB on November 1st, 2014, 2:35 am

Why panic? You have benign twitches (confirmed by EMG and time-elapsed) and are twitching.

Not saying it is easy to accept but that is what is happening here. Annoying but ultimately harmless. I thought my right leg would never stop but it did (after 3 weeks) and I am absolutely fine.

Your anxiety makes your current situation extremely unpleasant, I hope you are able to feel better soon.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 1st, 2014, 5:25 am

Thank you RGB,

It is the first time in 12 months i am experiencing something like this.
My twitches were normally random with a few exceptions that were present at the same spot for a few weeks but not firing constantly 24/7.
The doctors who examined me all those months were very rarely witnesses in any of my twitches.
The last 24 hours this thing doesn't want to stop. It is scary to watch.
The funny thing is that yesterday i went to have another EMG in the legs.
While the neuro was performing the EMG i was feeling the twitches in my arm but i was too scared to mention to him anything.
In the legs he totally checked 6 muscles (to both) and a few of them were making sounds while i was at rest. This was scary. He said that its not fibrilations but those sounds were because my muscles were not relaxed. I am trying to accept this because he is one of the best (if not the best) in my country and his signature is very important.
In addition, one month ago i had another EMG on my right arm and right leg (again) and i remember that he also put the needle to my left bicep (the one which is currently twitching crazily) and it was quite and fine.
The only logical explanation i can find is that 1 day before this twitching started i had a long trip with too many luggage to carry plus the anxiety on the day of the EMG.
I am going to use some Xanax today so i can relax and see what happens. The twitching is pretty annoying but the fear of ALS is what makes me crazy...
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Re: Worst twitching ever - Please help

Postby LKP1231 on November 1st, 2014, 7:26 am

Clean emgs. You don't have anything bad! Benign. Wish my emg was clean. I'd be dancing and celebrating.
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 1st, 2014, 9:22 am

Hi LKP,

Thanks.
I read a few of your past posts and i can't see where your EMG was not clean....??? Has something changed?

Anyway i think i hold the record of EMGs in this site. Maybe because it is easy in my country to go in private and not really expensive.
I have done many EMGs, i think around 25 over the last 12 months. All of them because of my fear. No doctor ever asked me to do so.
I was freaking out when i heard some noises to any muscle "suppose-singly relaxed" - and even though doctors were clear that this was not fibs and my EMGs were totally clean i never believed them. So i went again for an EMG to this muscle and again and again...
When i felt strange to a part of my body i went to EMG that part. Tongue, legs, arms, masseter, bulbar... you name it!
I read articles stating that EMG is an objective test etc and i was freaking out more.
The truth is that ALS is diagnosed easily by even a young doctor who performs EMG. I realized that they could make a wrong ALS diagnosis but NEVER a mistake telling you the opposite...

I hope you find your peace very soon because i have also similar problems with my wife as she can't stand anymore my obsession with this fear.
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Re: Worst twitching ever - Please help

Postby LKP1231 on November 1st, 2014, 9:36 am

My emg results were told to me without a lot of info at first stating just fascis in left thight and right calf. The neuro made some other comments that confused me and I pushed for more information. Wish I had left it there.
They were not fascics they were signs of motor denervation. I think because he felt they could be from the issues picked up on the MRI from my lower back he just gave me the least info he felt necessary. But bc of that he left me confused. I did then see a neuromuscular specialist who agreed with the current diagnosis but also said the emg should have been more extensive to determine the cause. Nothing was tested in my back to support the back theory. So I'm doing physical therapy (and btw I never had any pain numbness or tingling either to support the back diagnosis). I go back to the first neuro Nov 20. I do have an appt with an *** clinic Dec. 22. I'm pretty terrified. Thanks for reading.
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 1st, 2014, 10:25 am

LKP1231 wrote:My emg results were told to me without a lot of info at first stating just fascis in left thight and right calf. The neuro made some other comments that confused me and I pushed for more information. Wish I had left it there.
They were not fascics they were signs of motor denervation. I think because he felt they could be from the issues picked up on the MRI from my lower back he just gave me the least info he felt necessary. But bc of that he left me confused. I did then see a neuromuscular specialist who agreed with the current diagnosis but also said the emg should have been more extensive to determine the cause. Nothing was tested in my back to support the back theory. So I'm doing physical therapy (and btw I never had any pain numbness or tingling either to support the back diagnosis). I go back to the first neuro Nov 20. I do have an appt with an *** clinic Dec. 22. I'm pretty terrified. Thanks for reading.


Sorry LKP but i am a bit confused.
The doctor who performed the EMG told you that you only had fascics... right? Is this in his report?
Then you go to your neuro to discuss about it and he says that its not only fascics but also signs of denervation...(did he say chronic or current?) How did he come to this conclusion? Was this on the EMG report?
The neuromuscular specialist agreed with which diagnosis...? I am very curious to know why there are 2 different diagnosis from only 1 EMG. How can a neurologist change the diagnosis from the Doctor who actually performed the EMG??? I hope you understand what i want to say.
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Re: Worst twitching ever - Please help

Postby LKP1231 on November 1st, 2014, 10:58 am

The first neuro said fascics but when I questioned him he said denervation as if it were the same thing! The supposed diagnosis is lumbar radiculopathy but the emg did not test the spine so it's hard to say for sure. The denervation was not called chronic which is why without a recent known injury I can't understand that this all just started happening? So you can see why I don't feel safe.
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 1st, 2014, 12:50 pm

Just an update --- Today twitching on my left bicep seems to be much much less than yesterday. Almost disappeared. I have though a pain in the muscle probably from the overuse because of the yesterday twitching.
If it doesn't come back (i hope it won't) then i guess this twitching was a combination of my long trip and lifting luggage, baby etc., the lack of sleep and the extra stress i had yesterday morning.
Lets see.
I believe once we realize from where this thing comes from then it would be much easier to calm down and stop being scared
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Re: Worst twitching ever - Please help

Postby d4twitch on November 1st, 2014, 11:03 pm

Happens to me pretty often and I've been twitching for 6 months, but haven't been to a neuro. If I twitch consistently in any area for a while that muscle will get tired until the twitching finally subsides. Right now I have near constant twitching in all the fingers in my left hand for the past 3 days now and my hand feels very awkward and slightly painful. Seems like a pretty normal thing for muscles to get tired if you get a hotspot. My first hotspots were my elbows and they ached for a while then it went away. Second major hotspot I had was the arches of my feet...ached and went away. Seems pretty consistent so far, but who knows :P.
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 2nd, 2014, 5:10 am

Hi d4,

I also had/have this feet arches twitching especially on my right foot.
Anyway the reason i got so scared was because it was the first time i had so much twitching in the same spot (right bicep) and to be honest it was very aggressive too.
Gladly it lasted for only 24hours... i hope it won't come back again as it was really scary.
Another strange thing is that during those 12 months of my ALS concerns there were times that my right arm felt weaker and times when my left arm felt weaker (which is normal because i am right handed) - I cannot really judge if this is real or it comes from my mind.

Additionally i have just now found an article http://pn.bmj.com/content/early/2013/04 ... full?rss=1 (i am not sure if i am allowed to post a link - I'm sorry if i am not) which basically states that men under 40 who present with fasciculations and no other symptoms (like weakness, atrophy etc.) they shouldn't even be advised to go for an EMG. Based on the studies it is sure that this is a benign condition.

Cheers

Pascal
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 3rd, 2014, 9:05 am

A small update.
Tomorrow morning i am going for an EMG of my arms.
After this extensive twitching my left bicep, tricep and deltoid feel strange. It doesn't twitch so much anymore but i feel a bit weaker... I checked my medical reports and my left bicep was checked with an EMG on the 16th of October so i hope that i won't have any unpleasant surprises.
There will be a new doctor (never had an EMG there) and highly qualified so i hope this story finally ends.
I am not prepared to continue fearing the whole of my life. I hope i can get some good answers tomorrow.
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Re: Worst twitching ever - Please help

Postby LKP1231 on November 3rd, 2014, 9:11 am

Your left bicep was checked two weeks ago? I doubt there will be any changes!
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 3rd, 2014, 9:56 am

You know in my country it is quite easy and not so expensive to have access to EMGs.
During the last few times of my EMGs there were muscles that the machine was noisy even when my muscles were supposed to be relaxed.
The doctors were claiming that it was because my muscles weren't fully relaxed. That it was movement and not any pathological issue.
The truth is that both of the Doctors who performed the last two EMGs are the top in this country but still because they are monitoring me since the beginning of this situation i felt like arranging an appointment with a different doctor and see what she has to say after the EMG.
I really want to end this story. I can't live in fear and panic all the time.
I will see tomorrow and i hope that i won't have any unpleasant surprises
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Re: Worst twitching ever - Please help

Postby Pascal35 on November 3rd, 2014, 10:25 am

Adding to my previous post i really wish i could turn the clock back to the 20th of November 2013 when i firstly checked on the internet because i felt a twitch on my right bicep. I wish i would have never checked and found out about this terminal illness.
Since then i had sooooo many tests and neurological visits in 3 different countries every time for a different symptom, so many EMGs, so much money spent, started benzos, started but stopped quickly antidepressant pills, hours of internet searching reading stories about people with ALS, panicking about everything was happening on my body...
And now after all medical reassurances i arranged another EMG for tomorrow morning and my fear is like it is my first one. Like i never checked any of my muscles before...
Apologies for opening my heart to all of you guys but i really suffer here. And together with me my whole family.
I try to think logically but the fear doesn't let me believe it!!!
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Re: Worst twitching ever - Please help

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