Hi all...ALS fears

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Hi all...ALS fears

Postby Blade1409 on September 30th, 2014, 8:40 am

Hi all,

I actually posted this on a different board, but then realised it belonged here. Sorry!

I'm new here, so go easy on me please. This might take a while to explain.

A few months back (June) I scuffed the toes of my right foot on the ground, and for the next few weeks I found myself doing it at least once a day. I was initially terrified at the thought of MS (my father passed away from complications of the disease in 2008). I went for a consultation with a neurologist who scheduled me an MRI (which I went for a few weeks ago and am awaiting results of)

The day of the consultation with my neurologist however I happened to stumble across the symptoms of ALS and it struck the fear of God into me. Since then my right foot has felt weak (although the scuffing has stopped-perhaps I'm walking differently?). I went for a private EMG at the end of August which came back completely clear, and then went on holiday for 2 weeks. Upon my return I began to experience sporadic twiching all over, which initially did not bother me, however when I looked at my right foot, I could see twitching but not feel it. I immediately emailed the Dr who had performed the EMG on me initially whoch told me to go back and see him. I went for this second EMG yesterday, and 2 fasciculations were found in the muscle of my right foot (but nothing else from what he told me)

I've spent the last few months worrying myself sick over the thought of ALS, and I've been driving myself and my wife crazy. The fear I have is that these fasciculations will continue and when I go back to see the Dr in 6 months (as he suggested), they'll still be there, along with signs of denervation.

I'm so scared I'm finding it hard to eat, work and sleep. Any advice or reassurance welcome.

Thanks so much guys, I feel this might not be the last time you hear from me in the next few months.
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Re: Hi all...ALS fears

Postby misterjuanperalta on September 30th, 2014, 8:48 am

Best advice. Don't fear or worry because it does not produce benefits to your health. Easier said, but must be attempted.
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Re: Hi all...ALS fears

Postby Blade1409 on September 30th, 2014, 11:05 am

Please guys, going out of my mind with worry here :(
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Re: Hi all...ALS fears

Postby LKP1231 on September 30th, 2014, 11:32 am

I can't offer too much bc I'm waiting for my emg Thursday, but it seems to me your foot would not recover if you had a progressive disease! Even if you're walking differently you simply could not lift it up. If you had 2 emgs and all that was seen was 2 facics then it would seem to me that's a good result.
Today I was driving and I moved my foot to the gas twice and it was too low to reach. I'm trying to attribute that to wearing different shoes bc each other time it was fine.
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Re: Hi all...ALS fears

Postby Blade1409 on September 30th, 2014, 11:52 am

Are emg's with fasciculations considered abnormal? :(
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Re: Hi all...ALS fears

Postby LKP1231 on September 30th, 2014, 12:00 pm

I don't believe so, I think many here have had them seen. I think there are other factors. What did the dr say? If there was no concern on his part there should not be on yours.
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Re: Hi all...ALS fears

Postby Blade1409 on September 30th, 2014, 12:15 pm

No, he said go back in 6 months if they're still there.

Looking around now, I see that hardly anybody has fasciculations show up in the emg.

I'm so so worried now.
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Re: Hi all...ALS fears

Postby LKP1231 on September 30th, 2014, 12:25 pm

I wish someone else would chime in here. I don't want to give wrong info but I'm sure there have been a few where fascics were seen. I don't believe that means you have anything sinister. 6 months is a long time, possibly he is figuring by then you won't have need to come back? I'm the same as you, I'd worry but I know there are many on here that will tell you this doesn't mean what you are thinking.
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Re: Hi all...ALS fears

Postby LKP1231 on September 30th, 2014, 12:29 pm

Did he do any strength testing? If your first symptom was June I would think there would be at least some moderate clinical weakness (not just what you may think is feeling weak but truly things you could not do).
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Re: Hi all...ALS fears

Postby emmie.s on September 30th, 2014, 1:05 pm

I've come across a few posts from vets here in which fasciculations INDEED showed up on the EMG. I hope someone chimes in here, because I know I've seen it before but I just cant recall which member. Maybe Bobajo or Raindog (not sure of the spelling)?
We have BFS, the "F" standing for fasciculations, so why would you be surprised that they show up? The question is not the presence of fasciculations, but rather if denervation and other changes appeared. If your EMG came up clean regarding that, then you should take a deep breath. Did your neuro tell you that the EMG was questionable? Perhaps you should get a second opinion with someone who specializes in neuromuscular disease.

I hope you can get your anxiety under control, I know its easier said than done. My heart always goes out to new members like you, I can remember the crippling fear and anxiety. Prayers and positive thoughts coming your way.
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Re: Hi all...ALS fears

Postby Yuliasir on September 30th, 2014, 1:08 pm

Looking around now, I see that hardly anybody has fasciculations show up in the emg.


Looks like you did not get deep enough into search. there are many people here ho have dirty EMG, fasciulations on EMG, etc. I am here for three years and I have seen dozens of such reports and numberless explanations of benign nature of fasculations on EMG if they are not associated with other features directly pointing to denervation and specifically to motor units damage.
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Re: Hi all...ALS fears

Postby Twitchpar on September 30th, 2014, 2:51 pm

I had fasics show on my emg about a year ago ! I'm still fine ... I still have twitches and weird sensory symptoms but nothing else . The doctor told me the fact that fasics showed on your emg with no other companion is actually a good sign ! She is a really good neurologist in ucla which has an amazing neurology department so you shouldn't worry.
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Re: Hi all...ALS fears

Postby mwagner on September 30th, 2014, 3:05 pm

Oh my goodness, I'm glad I saw this post. Fasciculations are not a bad finding in an EMG. In fact, they were found in mine, as well as many, many people on this board (I would venture to say the majority). We have a fasciculation disorder, so why would it be bad to find fasciculations in an EMG?

Also, look at the Mayo study. The abnormality found in their EMGs were fasciculations, and they were all fine several years later. It's not fasciculations that they are looking for to rule out <you know what>.

Please don't stress over this. My last point is that my neuro (3 years ago) refused to do an EMG on my feet. I was twitching like mad on my feet. He only did my legs. He said that the vast majority of normal people would have abnormal findings on an EMG done on their feet, because there is so much "traffic" there. I think what he meant was that our feet are so heavily used, that you would be pressed to have a perfect EMG on anyone's feet. So a couple of fasciculations on your feet mean nothing. Really.
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Re: Hi all...ALS fears

Postby LKP1231 on October 2nd, 2014, 11:20 am

I had one in my left thigh and one in my right calf. So there ya go. Blamed on bulging discs and pinched nerves and no follow up needed. No signs of *** based on all my collective testing.
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Re: Hi all...ALS fears

Postby Pascal35 on October 2nd, 2014, 12:41 pm

Blade1409 wrote:Are emg's with fasciculations considered abnormal? :(



Hi Blade,

First of all i would like to make a statement about your doctor.
You said you had your first EMG end of August and was totally clean... (what muscles were checked?)
After two weeks of holidays your twitching started and you called the same doctor who asked you to make another EMG, a new one... What could be possibly change in just few weeks???? What is the purpose of an EMG if we cannot be reassured even for a few weeks time...?
And then in the 2nd EMG he only finds Fasciculations (obviously since you got twitching in the leg) but no spontaneous activity (fibs, pos waves)...AND instead of letting you go and relax he SUGGESTS that you come back again in 6 months...? Maybe the answer here is the word PRIVATE.
Anyway just to let you know. I have had over the past 11 months more than 20 EMGs. I have totally lost my mind with the ALS fear and whenever i was in panic i went for an EMG. Out of the 25 EMGs i got 3 or 4 that found fascics on my calves. So what? I was told that this is absolutely normal if there is no spontaneous activity.
In actual fact (if you look at it clearly) its better to monitor the fasciculations in the EMG (since we got them) because it can clearly tell you that are benign or not. And without fibs they normally are!
English is not my mother language but i hope you got what i wanted to say
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Re: Hi all...ALS fears

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