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Avatar universal

Scared to death.....

Hi.  I know you get questions like this all the time, but please....I just need something to hang on to.  

I have been twitching (Fsciculating) for approximately 4 months now.  It occurs in my feet, calves, hands, face.  Mostly in my calves and feet and prodominately on my left side.  I've been to two neurologists and both say it is my nerves.  The fist wanted me on PAXIL which I tried and did not agree with me.  Then I went to a Psychiatrist and he put me on BusPar (which helped only slightly with my anxiety).  The second Neuro put me through the clinical exam and said that I have nothing to worry about because the exam shows NOTHING out of the ordinary.  I went back to him after a couple of weeks because my fingers started twitching and he seemed a bit aggrivated because I didn't believe him.  I asked him about an EMG and he said that he STRONGLY discourages it and he felt that it would not help my problem and that I would keep finding symptoms related to ALS.  I scheduled one anyway but that doesn't come until Jan 22.  He did a NCV test on me (because I am a Diabetic) to check the nerve conduction to see if the Diabeties might be playing a role, but that came out normal.  I don't believe I have any weakness although being so hypervigilant (SP?) I can feel a slight difference from my left to my right hand.  I can also make my feet cramp up very easily by curling my toes.....this scares me as well.  I know this posting is all over the place, but I am shaking even when I am typing this because I am so scared.  Thanks in advance for your response.
Regards,
Brian
43 Responses
Avatar universal
With the public gaining increasing awareness about the tragedy of ALS, it's understandable that people like you are concerned about the possibility of having the disease when you're experiencing unexplained twitching. Glad that you don't have any weakness as this is usually the presenting symptom/sign of ALS.  Twitching is NOT always fasiculations.  An experienced neurologist and EMG should be able to distinguish the two. But even if they are fascics, there are other conditions that can cause isolated fasciculations such as benign fasciculation syndrome or thyroid disease. In the setting of ALS, the presence of fasciculations represent degeneration of the muscle cells, which means that by the time you develop them there should already be some other symptom/sign such as weakness. Nothing in medicine or life for that matter is 100%. It's ok to get an EMG if you just want to be as sure as possible that you don't have ALS. Early signs of ALS should be picked up on the EMG by now if you're really having true fascics, so it should definitively rule out the disease for you if it's normal. Good luck, rest easy.
Avatar universal
Hi Brian, I know how scared you are feeling.  I have had the same things going on for over a year now.  Mine started in approximately June, 2000.  I have the twitching in my legs mostly, but sometimes in my arms, abdomen, face, butt, etc.  The intensity changes.  Sometimes they are nearly gone, other times they get pretty bad.  I also saw a neurologist and I did have an EMG.  The neurologist said both were totally normal.  He said I did not have ALS (that was what I was worried about also).  He told me you always get severe weakness with that before you get the muscle twitching.  I am not sure if that is true, but I still do not have any weakness related to this twitching.  It is really aggravating sometimes, but I guess I am getting used to it.  It does not wake me from sleep at all.  My neurologist said sometimes people have this for years, can go away and recur again.  I know they call it "benign" fasciculation syndrome, but something has to be causing it, right?  I guess they just do not know the exact cause of this syndrome.  Feel free to Email me if you want to talk.  I know how scared you are feeling.  I felt the same way when I first started noticing the twitching.  Robyn
Avatar universal
Don't be scared.  Two neuros have said that you are OK.  I have been to the neuro many times, had a normal EMG and an NCS that was "a little slow" on one point in my right and left calves.  I twitch constantly in my right foot (it makes my toes move and I HATE that) and I also generally twitch randomly all over my body.  This has been going on since February of last year after I had a bad case of the flu while 7 months pregnant.  My neuro thinks it could be related to the flu virus and the lack of sleep due to my new baby.  I finally believe her (after too many stressed out visits determined that I was dying) and although the twitching is unnerving (I know) you should believe your neuros too.  You will see - your EMG will be totally normal.  99.9 percent chance it is merely BFS and will go away over time.  If you had ALS you would have experienced wasting and be pretty weak by now.  It moves that fast.  Don't stress, it will make it worse. I KNOW!  YGD
Avatar universal
Robyn,
Thanks for your post.  I just want to know "why?" this is happening.  I was fine 5 or so months ago.  I just want to go back to the way I was back then.  I feel like I am going to have a breakdown if this twitching doesn't stop.  I keep reading different things like "widespread fascic's are NOT normal".  I think I need that EMG to have something to say "this is why you don't have ALS."  I am only 32 years old and I know it is quite uncommon for someone my age to have this devistating disease, but I feel that because I have Diabeties, the normal stats do not apply to me.  My psychologist told me that "Lightning VERY RARELY strikes twice" meaning that being a Diabetic, my bad disease had already hit me and I should be concerned about that and not about having ALS.  I do agree (in a way), but I have had Diabeties for 20 years now and have kept it in GREAT control and really don't feel that this is from that.  I know you said I can email you, but where can I find your address?
Regards,
Brian
Avatar universal
Thanks for your support YGD.  I really appreciate the reassurance.
Avatar universal
Hi Brian, my Email address is ***@****.  Robyn
Avatar universal
Thanks,
I will email when I am not at work.  Thanks again.
Avatar universal
Have you had your Vitamin B12 checked?  This can cause twitching of nerves.  There are other symptoms as well, but check out other reasons by searching the net.  Just type in Cause of nerve twitching, and see what you get.
Avatar universal
BFowler,
I have had my B-12 checked along with my thyroid levels and all were O.K.  I also had a Lymes test that came back "Borderline", so the Neuro put me on antibiotics and had it retested and it came back normal.
Avatar universal
DO NOT search the net for "causes of twitching".  It will lead you exactly where you don't want to go.  BFS is much much more common than ALS.  The most common thing I hear about is weakness well before fasciculations (twitching).  The main thing you will find if you look up twitching is ALS.  But it is not the main symptom.
Avatar universal
Thanks,
I think the "NET" is what got me to the place I am now.  Basically screwed up and consantly scared.  It is the first thing I think of when I wake up in the morning and the last thing I think of when I go to bed.  It just plain ole' stinks!  Thanks for your post.
Avatar universal
Hi...I too have been experiencing twitching for over 2 weeks...I went to a neuro this week who said fasciculations were not the first symptom.  He also called mine BFS but scheduled an EMG for January 17 and bloodwork......since my vvisit with him I now have muscle cramping and I'm going crazy!!!!  I m convinced I have ALS..I have 2 children and I'm freaking.....My clinical exam was also normal...I know what you are going thru.
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