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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.
Avatar universal
I've had similar emotional reactions to searching to find the cause of my symptoms.  In my case all the searches lead to MS, while my MRI's have been repeatedly normal as has my neuro exam by my local neuro and an MS specialist at a referral center.  We have to educate ourselves but be careful not to obsess in the process

I found a psychiatrist/analyst helpful in talking about fears and what they mean to me.  An antidepressant and an antianxiety medication (clonazepam, aka "Klonopin") have also been helpful for now.

I still have an EMG and musle biopsy coming up, though.  And I have neurology follow-ups and serial MRI's to go through.

I understand completely what you mean though.  Although our symptoms are real, they may not be explainable nor do they seem to be disasters.  We need doctors worthy of our trust, high quality second opinions when we must (go with a list of questions), get a plan for follow-up and what to watch for, and make a plan to deal with the present.  I too know from experience that stressing out only makes things worse.

Make partners out of your doctors.

Good luck, B-Man.
Avatar universal
Brian:

I was in the exact same place you are, a month ago.  So frightened that I had ALS I was almost incapaciatated.  I ended up having the EMG and the Neurologist told me that he saw absolutely no neuromuscular disease. All blood tests were normal.  IT HELPED immensely.  He also said that in his experience the people that he tested who did have ALS didn't even know that they were twitching.  They apparently didn't feel them.  I have thyroid problems, was using asthma meds and was drinking WAY WAY too much coffee. He also said that sometimes it takes time to go away. I am still twitching but "trying" to ignore them.   Hope this helps.
Avatar universal
What were your symptoms? and how long after they started did you have the emg. I have had a neuro exam and emg both normal but am still terrified I have ALS and the emg missed it --any words of advice
ARA
Avatar universal
Thanks to you all...you all made me feel a bunch better about my situation.  I thank God for people like yourselves.  I've never been through anything like this in my life (even with the Diabeties) and I don't know how to handel it.  It does help when people like yourselves and GREAT doctors that can explain things the way that can actually calm fears down that you thought were un-calmable (I don't think that's even a word).  Again.....Thanks so much!!!!
Avatar universal
I'm a doctor myself, but I have found my own situation equally terrifying. . . and "knowing too much" and trying to (partly) take some control over the workup didn't help much.

Your tone sounded very familiar.  Although I'm still having a hard time calming myself, I am beginning to realize that there is only so much in this world we can control ourselves and that one big job for us all to do is to be patient as we deal with things that we can't control or explain.

Good luck, Brian.  To you. . . and to me. . . and to everyone out there.
Avatar universal
My symptoms came out of the blue.  Mostly in my calf muscles and feet then random 'blips' all over.  I didn't have any weakness, no pain, just twitching.  However, this all started after my eye twitched for a month or more. I have read that eye twitching is caffeine and stress.  In fact, I was talking to several co-workers and they all had this too.  I had my EMG three weeks after my first visit to the Dr. from a neurologist.  I also had a nerve conduction study which was also normal.
Avatar universal
Hi,

   I'm a 20 year old male, I've been experiencing all the same symptoms you have. I started twitching about 6 months ago. Since then I've been terrified that I had the onset of ALS. Seeing that I'm only 20 years old, this would be an extremely rare case. I've had numerous tests taken, everything but an EMG. My doc said I had anxiety, and we both came to the conclusion I'm a "hypochondriac" so to speak. I've read many forums on Anxiety (GAD) and also hypochondrism, and alot of the symptoms these disorders produce can somewhat mimic ALS, even MS. Nevertheless, I keep thinking I have the worst going on. I'm going to have my FD refer me to a neuro and see what the possible problem could be. Just recently I've been experiencing quite a bit of muscle fatigue, but not really weakness. Anxiety? Maybe. Hopefully my trip to the neuro will help calm me down, and put my mind at rest. It's always relieving your not alone when it comes to these things. Thanks for reading.
-Paul
Avatar universal
Has your twitching stayed the same or got worse---also my eye twiched for a couple of months before the body twitching.  I  had my emg almost two months after the body twitching started--- how long was it after the body twitching started did you have your emg? Are you able to put ALS OUT OF YOUR MIND NOW and are you having a followup check up with the neuro?
Ara
Avatar universal
i have had the same exact sypmtoms as you describe. My entire body has the bubbling sensation 24 hours a day, i also have   numbness and swelling in the feet, and also my lip has started to twitch. I have had a thoracic spinal mri, an emg, tons of neuropathy blood tests, and a spinal tap. Everything has come back normal except my doc said that the emg showed nueropathy but could not narrow it down. My neurologist is stumped and suggested i go to the mayo clinic or a major chicago university for further testing. i have been put on neurontin which helps a lot. I still cannot exercise in any way and i cannot walk for a long time without sitting down for a awhile. I am frustrated beyond belief and do not know where to go from here. I have yet to seek further testing due to frustration, expense, and lack of any more vacation time at work. I have been given every diagnosis in the world from friends and family members and although i appreciate them trying to help I am tired of hearing strange disease names and telling me its all in my head or i just need to see a chiropractor. Any suggestions from anyone would be greatly appreciated on where i should go from here and if you have had any simliar symptoms/situations you could tell me about. thanks for your ear. michael  PLEASE E-MAIL ME AT ***@****
Avatar universal
I can honestly say that it is getting somewhat better.  I had my EMG approximately 3 to 4 weeks after the start of the twitching. I don't know if this has helped but I do minimal caffeine and have started taking magnesium and some very good vitamins. However, after I left the Dr.'s office and had a excellent outcome on the EMG, I felt like a ton had been lifted off my shoulders.  Every now and then the old ALS tapes start up but I honestly am trying to put it behind me.  I do have a follow-up in a week and that is mostly because I see a neuro group and the first Dr. just wants to go over things. If you want to e-mail me I am at ***@****.  Hope this helps.
Avatar universal
You guys need to go to this site.  Very helpful with group of twitchers there.....we've had every symptom and then some.  They will help to settle your nerves a bit.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&number=65&forum=Neuromuscular&DaysPrune=365&startpoint=0
Avatar universal
The only way you are going to relive your mind is by going to a specialist that deals with this stuff to rule it out.  I just went to a MDA clinic in San Francisco.  The doctors there are world class and some of the best in the world on that subject.
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