Haileyside
Active member
Hi.I'm thankful for all of you and this forum for being so helpful in calming down my anxiety about fasciculations.I'm now 35. About 11 months ago I began with a finger (left index) moving alone without control. A couple of days later I saw my GP who told me that it shouldn't be very important. I also noticed that my neck was not very stable at that time, moving slightly when I tried to be relaxed. I was seeing an otolaryngologist for a low noise in the left ear, and I told him about that movements in the neck, which he confirmed, saying that I should be careful about that, because it could be some kind of mild epilepsy. I called a friend who is an orthopedic surgeon and he recommended a neuro-surgeon, a friend of his. Meanwhile (10 months ago), I noticed that twitches where appearing in several muscles, especially on the legs and arms. I had an appointment with the neuro-surgeon and I told him about that. He made a clinical observation, with no fasciculations but with hyperreflexya on the left knee and nystagmus (I have nystagmus since I was a child). With the description of fasciculations he was frightened and he told me to make a MR and an EMG, and to make it quickly. That's when I began to look for fascuculations on the internet and I found the same thing that most of you: lots of stuff about ALS. I began to become frightened. I made the MR and, when I made the EMG, the neuro-physiologist told me that I had nothing, that I was perfectly normal and that she would be very surprised if I had that at my age.I saw the neuro-surgeon again and he was much more relaxed, but he recommended me to see a good neurologist to see what this fasciculations were about. Meanwhile, I was still scared: what if the neuro-physiologist was wrong? What if...? You can imagine that. I also had very painful muscles all over the body (not exactly cramps).I then had an appointment with the neuro, who observed me and was very clear in his statements: I had no weakness, no atrophy, my nystagmus was a very normal one, I had a "perfect muscular system" and no sign of ALS. And a reassuring EMG. He also told me that it wasn't fasciculations, but myokymia. He gave me Xanax to be more relaxed, and indeed I was. He also gave me magnesium and the pains stopped. But I was still thinking "what if...?" from time to time. I was a little bit concerned about not knowing what this was about. I then discovered this site, and found lots of information about BFS, lots of reassuring posts of people sufrering from the same thing, and lots of coincidences with what the neuro had said.That's when I began to be really more relaxed about this. The problem was that, meanwhile (last november) my mother died suddenly from a heart attack, which, appart from all the rest, scared me again. I was feeling bad, with a sense of heaviness in the chest and some frightening extra-systole. My GP had me make some heart tests and it was all ok, and that was probably (I hope) due to anxiety. Meanwhile I was feeling much less the fasciculations. I thought that I was always moving from neurologic to cardiac concerns, and I became a bit more relaxed. Indeed, I had a period with no heart concerns and with very rare and not very concerning fasciculations. It was ok. It was a period when I became more organized, being again capable of doing well the lots of work (PhD dissertation, school administration, etc.)I have to do and being efficient. However, in the last two weeks (maybe) I began to feel more fasciculations again (all over the body) and I became more concerned again. It's true that I'm in a period in which I'm not being very capable of organizing my work, being desperate about it and not sleeping very much. But still... the questions came back again. What if...? Why do I have this? I have strong reasons not to think about ALS (no weakness at all, appart some tired muscles on some days), but...? I can't stop looking at my hands and even comparing them with several friend's ones... I came back to this forum which is always reassuring, but I also looked for "benign fasciculations" on Google Advanced Scholar. And there I found two or three scientific articles telling about people with normal EMG's and only fasciculations who, later, developped ALS. So, I became a little bit concerned again. The truth is it also said that, in any case, the onset was very fast, and that people were developping all the symptoms very quickly. So, if, one of this days, I fall into the thing, I will now. I feel no weakness (just tired) at all for now. And no pains in the muscles, appart from the normal ones.So, what do you think? Is there a chance for our benign fasciculations not being so benign, as some articles seem to say?Thanks. Sorry for my english.Carlos
Carlos- you will be OK - you've gone through a lot so give yourself a break!!Don't pay attention to the exceptions or a few ambiguous studies where the data is not clear. You have more of a chance of being struck by lightening than getting ALS (look it up - here there is a whole discussion about it if you do a search). Explain to your adviser (profesor/el hefe) that you need a break then take a break even if it is just a few days. Go on a vacation, visit friends, family, whatever makes you relax and feel good. Remember that when you lose someone close to you, it always make you question your own mortality which may include questioning your own personal health. Maybe this questioning is nature's way of letting us know we need to enjoy our life?As far as fasics being benign - most here that have had them for a long time would agree that while they are extremely irritating and sometimes freaky, they are, however, still benign. Your neuro is the best to ask about this as he is trained in the presentation and progression - and you are already cleared by yours, right? DO not make yourself crazy over some fasics; you are a graduate student so making you crazy is the job of your primerio profesor.
However, I did blow-off high school spanish.Take care,Gary