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Re: Worst twitching ever - Please help

PostPosted: November 3rd, 2014, 11:15 am
by LKP1231
I agree if I could turn the clock back I would not have had an emg at all

Re: Worst twitching ever - Please help

PostPosted: November 3rd, 2014, 12:19 pm
by Vladro66
Good luck tomorrow with the emg testing

Re: Worst twitching ever - Please help

PostPosted: November 4th, 2014, 7:25 am
by Pascal35
Dear All,

Thanks for the interest. I just finished with my EMG in both arms and it is totally clean.
Will come back later with more details

Cheers

Re: Worst twitching ever - Please help

PostPosted: November 4th, 2014, 8:36 am
by bgr
Hi Pascal,
I had really bad twitches on my left arm, specifically on my brachialis (under the biceps). It lasted a few months, and your description is like mine. Check out my first post on this forum (viewtopic.php?f=8&t=19819), I think you will see similarities. So far I had to deal with my anxiety and fear, but my exams are also clean. I'm just trying to forget my fear and move on. Hope this last EMG will give you some reassurance and calm you down.

Re: Worst twitching ever - Please help

PostPosted: November 4th, 2014, 10:54 pm
by Pascal35
Hi again and thanks for your interest,

Even though i had so many EMGs that were clean by the doctors i have never had confidence over the people that performed those. I am a really difficult person and because my fear was so big i wanted answers which in some cases i wasn't getting.
I felt and i was right that in many cases the EMG was not performed correctly. For example in some cases they only cared to check spontaneous activity and there was no control of the motor units, in other cases i was listening to sounds during the time that the muscles were relaxed and i was afraid that these were fibrillations etc. I couldn't convince myself for the opposite.
Yesterday i had an extensive EMG on both arms (i had fascics as described in this thread) with a very determined doctor. She paid attention in every detail.
Good news was that there was nothing pathological to the totally 10 muscles checked. She was also trying to provoke muscle twitching in order to examine it electromyographically but we didn't even get it in the EMG.
Based on the fact that i have muscle twitching in several parts of my body (mild and moderate) over the past 12 months and there is still no evidence of any EMG muscle damage (arms are also more sensitive) i believe that i now have to move on and let those fears pass by. I hope i don't wake up next day with bulbar issues....lol
I will stay at the forum and try to share all the knowledge and experience that i gained (and will gain) in order to help people with similar issues and give proper advice as to when and what to check

Re: Worst twitching ever - Please help

PostPosted: November 4th, 2014, 11:22 pm
by readytocheckout
Hi Pascal

It's great that you found a determined doctor, even better the result. Congrats. Where you've been is right where I'm at right now, full of doubt. EMGs done too quick, not in the right place, not enough muscles tested, etc etc etc. I have an undiagnosed swallowing problem for 10 months and I have weakness in my right arm/hand (not clinical so I'm told though), and it feels like my right shoe is too big and now I'm getting burning and pain in my right foot.

The doubting is horrible and just adds anxiety fuel to the forest fire burning! Of course I'm very relieved that I've not been diagnosed with mnd, and I have to admit that I've had symptoms for too long now for me to not be disabled in some way, but does that help to ease the doubt - no way. Now they think I've got fibro, if this is all part of getting old then I'm in for a bumpy ride. Anyway the moral of my story - we have to get over the doubting - and so far I haven't learnt the skills to do that.

I'm very very pleased for you and wish you the best.

Re: Worst twitching ever - Please help

PostPosted: November 5th, 2014, 2:16 pm
by Pascal35
Hi "readytocheckout",

Thanks for your kind words.
Well based on my experience i would like to add some comments for your situation.
Regarding the "too soon" factor...
I believe that once the ALS Fascics start it means that there should be fibs in the EMG. Otherwise those fascics are not pathological.
Also after 6-8 weeks the Motor Unit Potentials should start to change due to denervation if there is ALS.
So basically after 2-3 months of twitching if the EMG is clean then in theory all should be fine.

With regards to the swallowing issues. Have you checked GERD? Have you visited a doctor for that?
By the way. How old are you?

All the best

Re: Worst twitching ever - Please help

PostPosted: December 5th, 2014, 6:59 am
by readytocheckout
Pascal35 wrote:With regards to the swallowing issues. Have you checked GERD? Have you visited a doctor for that?
By the way. How old are you?


I do have gerd but it's well and truly under control with nexium. I'm having a scope done in a few weeks so maybe I'll find out some more then. I'm mid 50s.

Re: Worst twitching ever - Please help

PostPosted: December 5th, 2014, 9:17 am
by Pascal35
readytocheckout wrote:
Pascal35 wrote:With regards to the swallowing issues. Have you checked GERD? Have you visited a doctor for that?
By the way. How old are you?


I do have gerd but it's well and truly under control with nexium. I'm having a scope done in a few weeks so maybe I'll find out some more then. I'm mid 50s.



Please note that Nexium is said by many that can cause muscle twitches - i think you must take extra magnesium

Re: Worst twitching ever - Please help

PostPosted: June 4th, 2015, 6:27 am
by Vladro66
New update. Still twiching everywhere,spasming, jerking still no answer. In february emg still no mnd, change all the medicine i mean gabapentin, lamictal, phenobarbital and i m only taking cymbalta and atarax. But its not working also so the pain i git in all my muscle, weakness, involuntary contraction, cramps, stiffness
I will keep you updayed if ill find a way