I have the tongue tremor :(

Another one they say is if you can't whistle, well sometimes I can't and most times not what most people would call whistling

I now try and stop looking in the mirror to see if it is still there. I first noticed an occasional tremor about three years ago, when I went looking for symptoms of ALS. I did not notice it after I had been given the all clear by a neuro that I did not have ALS or Parkinsons (then).

However it is back again, I noticed it after I lost my voice shouting at the telephone when it would not answer.

I do have weakness in the little finger of my left hand, which again came on several years ago, that was supposedly ulnar nerve entrapment, I have had the op freeing the nerve but it is still weak, I think the strength is gone for good.

What is actually taking me back to the neuro is my left foot, I have pins and needles in the toes which won't go away, my leg was clear when I had the tests that determined the trapped nerves in my arms and my GP was reluctant to send me back to the neuro.

Problem in the UK is that Dr's are very reluctant to send you to a specialist, you might get sent to a physio who will then tell you to excercise and that is it.

Well I have been trying to get my GP to bring the neuro appointment forward as I need to be reassured. When I went back to my GP with the tongue thing, she would not rule out ALS this time.

I went to emergency last week afraid that I could not swallow, the Dr there assured me my swallowing was normal, but again said he could not say I did not have ALS and that I would have to wait to see the neuro.

Hi~and thanks for the post!  It sounds like a lot of people have the benign twitches, my brother had them for a long time, and still gets it from time to time.  The thing is, his also started when he was younger.  I never had this before until now, and I'm 47.  Yesterday, it wasn't as bad, but now today, I'm having them in my legs alot.  Do you ever have a twitch that feels so strong that it actually feels like a cramp?  For some reason, these symptoms can make you so incredibly anxious.  I sort of start getting shaky when the twitches come on badly.  I went to a Chiropractor, and he said I have pinched nerves, but I don't know if he really knows what's causing the twitches.  I am deciding whether or not to go back.  I also today am having twitches in my head area, I swear, I can't be this nervous!!  I wish my neuro appointment were sooner, but it'll be here soon, it's on Monday.  
    I would feel very reassured if I were you that you've had these since you were young.  That would mean to me that your body is prone to them, and it's how you react to stress.  That's what my brother says, that he gets them still now, but sort of ignores them because he just figures that is what his body does.  It's like, for years now, I've had heart palpitations, and I've just gotten used to those, because it's the way my body dealt with stress.  But, this is new to me, and I think that is mostly when the doctors worry, is when a new symptom pops up, especially later in life.  I think these twitches can drive you crazy, I sometimes sit here waiting for the next one, and of course it will happen.  The internet has been useful, but now I have too much info on ALS, and I spot out more symptoms of it.  I think it's just that it's such a terrible disease, we are all afraid of it.  It sounds like it's still pretty rare, and that twitches are very secondary to other symptoms that are going on.  The weakness thing can be tricky, too.  I of course know now about how weakness should show up first, and now I sort of have perceived weakness in my legs, but it's a weird feeling, like my nerves are on edge or something, I can't really describe it.  But, I certainly am looking for symptoms.  I read recently where a tongue tremor is a hallmark sign of ALS, and now I am kind of waiting for that one.  Yikes~~anyway, thanks!  Good luck, Val

What worries me is I am in the right age range for ALS.

However you would think that the fact I have had fasciculations since my teens would cause me not to worry.

I did not know until relatively recently what they were called. However I am that much of a worrier that the fact that I have had them for so long on and off, does not convince me that I can nonetheless have ALS on top of that creeping up on me and that it would be sneaky enough to be masked by pre existing symptoms :(

This would be my second ALS scare, so I wonder could I even have had it for a few years now, misdiagnosed as nerve entrapments, or am I just unlucky (lucky depending on how you look at it) to have chronic and multiple nerve entrapment problems?

However be assured you can have fasciculations that are benign, for most of my life mine have been.