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MK4000

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Hi @ All,

first I would like to introduce myself. My name is Mike I am 34 years old.

I have some worries and questions and really hope that you could help me.

So let´s start in 2007. When I was 23 years old, so it means nearly 11 years ago I have started with muscle twitching. In that time it begun with twitching on my eyes which took many weeks and then spread to my whole body except on my tongue. I visited a neurologist in this time but he couldn´t found something wrong and also did a short EMG.
So I accepted these fasciculation on my body and they went along with me about nearly a year. I had everyday twitches on my muscles. It twitched one, two or three times maybe sometimes more stopped and went to another muscle. Someday the twitches became less and they nearly disappear.

In the last year´s I had only less fasciculation maybe like every normal person has.

At the end of April respectively beginning of May this year the twitches come back.

First I was not worried because I though it´s normal they will be disappear but they didn´t. I got these fasciculation again on my hole body and especially on my left calve. When they came back they were at most in my left calve. But also on the rest of my body. The fasciculation in my calve felt different like the twitches I know from the past. It´s difficult to describe but it felt like bubble / vibrate / pulsate. Since I didn´t know these fasciculation because bevor every muscle twitched like described 2-3 times till it stopped to go to another muscle I tried to find out the reason for twitching and asked google which maybe was the biggest mistake I have ever done.

So what happened? I found ALS disease and become scared of this because I have the same symptoms.

What are my symptoms?
Of course fasciculation, pain in my arms and legs, weakness (my arms and legs felt tired but I can do everythink for example jogging 50 miles last month), sometimes a feeling of burning in my muscles, breathing problems, fatigue, tremor.

So I tried to get an appointment with my neuro I visited 11 years ago. It was very difficult in this moment to get an appointment and I had to wait 2 month. I was so worried so I looked for some other neuros. I was successful and found a neurologist who has to been payed private by me but I got an appointment the next day.

Neurologist Nr. 1 ( Mai 2018 )
I explained my symptoms and my fear of ALS and he told me that ALS is a rarely disease and to become this disease at my age I would be much more rarely. So he checked my reflexes which were fine did an neurologic status and then did an EMG on 5 muscles. He asked me where he should started and since my calve was in this moment the muscle which twitched a lot I told him to start there. He put the needle in my calve and then detected there 2 fasciculation. Then he said oh with ALS it looks the same and I though now it’s the end… He observed 4 further muscles which were fine. At the end he went back to the
Calve with the fasciculation but now the calve was also fine. I asked him if the two fasciculation are the same like spontaneous activity and he said yes it´s the same. He told me that he can´t eliminate ALS and would be much more happy if he wouldn´t found this fasciculation. I should come in some month again. In the diagnostics he wrote that he couldn´t found an indication for MND and he assume BFS.

Neurologist Nr.2 ( Mai 2018 )
Since I was so worried about his words (look like ALS) I arranged an appointment with a professor an ALS expert in an university hospital.
He did a short neuro exam of me he told me that this sounds like BFS and that he also have fasciculation since years. He didn´t do an EMG because he said it is not necessary and he is one of the most experienced ALS-experts all over the world.
In this moment I didn´t help me because I read a lot of ALS and know that it is difficult to diagnostic. I was in worry again.

Neurologist Nr.3 ( June 2018 )
2 Month after beginning twitching I had an appointment with the neuro I visited 11 years ago. He also checked my neuro status and I told him that I have also a strange feeling on my tongue and that there are maybe fasciculation too. He just had a short look in my mouth, looked at my body. He said that he couldn´t see any fasciculation and after the examination he did an EMG on my left biceps, left cave (the first neuro found there fasciculation), and right thigh. During the EMG he told me that my EMG is very good. No abnormality he couldn´t find anything wrong. He diagnosed me with benign fasciculation.

Neurologist Nr.4 + Nr.5 ( July 2018 )
I was still afraid of ALS and decided to go to a further neurologist. The neurologist was not able to do an EMG checked my blood which was fine and sent me to a colleague at a hospital to do the EMG. The deputy neurologist examined me and told me that he could not imagine that my fasciculation are ALS related. He did many reflex test and checked my strength. I also told him that I had detected fasciculation on my tongue. He also looked at my tongue asked me if I have spelling problems I hadn´t at this time and sent me to EMG which was done by a cute young woman doctor. She smiled when I told her that I am here because the neuro was not able to an EMG and he would like to exclude ALS. She did a very long EMG on several muscles (thumb, arm left+right, calves lef+right, thigh right, biceps right, but not tongue). When she did the EMG she told me look there was one fasciculation. I was afraid and she told me that this is not pathological and everything is fine. When I asked her if this fasciculation is the same like spontaneous activity she told me no this is complete different. I was confused since the first neuro said it is the same. She sent me back to the deputy neurologist who told me that there is no indication of MND and its benign. I went at home and I were very happy about the results.

The fasciculation are still here but the twitching of my calve changed and become much more better for some weeks. But the worst chase happened, my tongue started twitching a lot. I also have some strange feeling on my tongue. Sometimes my tongue hurts, sometimes if felt like muscle soreness, burning or a kind of prickling (maybe these are symptoms of bulbar ALS and tongue fibrillation?). I can move my tongue normaly. Sometimes I think I lisp which I definitely didn´t before when I say words with “S”. The twitches are on the tip of my tongue. I can provoke the twitches when I stick the tongue out, toll the tongue or push the tongue against my chops. The twitching on the tip of my tongue makes me crazy since I think its bulbar ALS related and that twitching is fibrillation. I read that some of you also have tongue twitching but I also read that tongue twitching always is pathological.

I have uploaded two clips of my twitching tongue. Could you experts please have a short look. Is this ALS related fibrillation? What should I do? Go to the neuro again? Since all did only EMG´s on the lower part of my body and not on the upper and the tongue could it be possible that it is the bullbar ALS, and therefore none of the neuros was able to find abnormalities?

https://www.youtube.com/watch?v=7jZc6aU50yM

https://www.youtube.com/watch?v=srMVFmC9ey0

Sorry all for the long article and sorry for the bad English!

Mike
 

KarenNWendyn

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So you’ve seen four neurologists including an ALS expert at a university hospital. It doesn’t sound like any of them found any weakness on your exam, right? That alone rules out ALS.

And then the EMGs were unremarkable except for occasional fasciculations. So there’s nothing here that suggests ALS to me.

Videos of your tongue are not really helpful to us. For one thing, it’s hard to keep your tongue perfectly still when you stick it out.

If four neurologists couldn’t diagnose you with ALS, then neither can we.
 

Clearwater AL

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After 1,300+ words, 16 paragraphs we had to bear through here goes...

two Neurologists in one month (May), a Neurologist in June and one in July
all told you... you do not have ALS.

It amazes me you were able to see four Neurologists within 3 months when
we have read people living in the UK wait months to get a Neuro appointment.

I'd bet it is a unanimous decision here too... you do not have ALS.

You're good to go. :) No need to reply.
 
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MK4000

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Hi Karen, Hi Clearwater,

thank you for your Response.

I would like to apologise to wrote there I really don´t want to be unfair to you since you have the Diagnosis which I do not have at the moment.

I am really afraid at the moment since I have now these tongue twichting too from which i have read that this is usually pathological and I also have somethimes a Lisp feeling. The neurologists didn´t consider it is necessary to check my tongue although I told them that I have there twichting too. Maybe this was a mistake.

Sorry, Sorry! I wish you all the best.
 

ShiftKicker

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The folks here are in no way able to help you with your symptoms. They have told you they do not see ALS. As have a few different doctors. Please understand that continued requests to engage and reassure you about your concerns is not something this forum is set up for.

Keep pursuing help from your doctors to get to the bottom of your worries, but you may be sure it is not ALS- per your doctors, neurologists, EMG and the knowledgeable folks here.

No more posting please.
 
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