Hello, My name is Cindy and I´m from Germany, so please notice that English is not my mother language. But I need advice and there is nothing comparable with this website in Germany. I twitch for 8 years now. 24 ours a day in my calves and feet. I went through all the fears about ALS most of you know. But the years passed and I got used to the twitches. They never stop and sometimes gets worse in cases of stress or illness. All normal so far. A few weeks ago I woke up in the morning and my left upper arm twitched like hell. Not only one single hotspot, but every time another part of the upper arm. That scares me now because I´m afraid that this a sign for ALS. No twitches on the other arm. Of cource I have twitches all over my body, but only sometimes and never so prominent than in this arm now. Only my calves are twitching 24 hours a day. And now my arm does the same. Did anyone of you made the same experience. I am afraid that all the ALS fears will come up again. It needed a lot of time to get over them and I don´t want to live with this again. Thank you so much!
Living with Chronic Twitching
- Thread starter VawelMaid
- Start date
I think personally that after 8 years of constant twitches you can not have ALS. You are a twitcher, sure, but not ALS patient. If you twitched for 8 years the twitches were in your hand also from time to time? Twitches seem to change during the passage of time, mine do also and I am 1 year now almost.Have you been to the doctor 8 years ago? How did you overcome your fear, with time? If you can still do things 8 years later you are ok. I got twitches on the left side only and now I get hotspots on both sides lasting month or more, 24/7. So the symptoms are changing. I think if you twitch so long time and now it has changed location it is nothing sinister. Don't go again in this dark pit of ALS fear if you have no other symptoms.
Jerry2 is correct. Had your fasciculations been caused by lower motor neuron degeneration associated with ALS you would have noticed significant symptoms such as weakness and atrophy very early on in your 8 year period of twitching.You should not spend time worrying about ALS, because nothing you mentioned is even slightly indicative of such a diagnosis. As you admitted, your condition is made worse by stress, and worrying about it will only work to feed the cycle. Your twitches are not going to kill you. Try to relax, and if you need to have extra reassurance visit a neurologist who will tell you the same thing.
I saw two doctors during the last years and they both told me that my problems are selfmade. The twitches are not caused by an illness but by myself. It is hard to understand why so many people have to deal with this problem and no one can give us an explanation for it. If a doctor is not able to find a cure for a disease he always tells the patients that their problems are caused by stress because they are nervous in general. If I would now visit one of my doctors they would not even test me, they would offer me an antidepressant drug to calm me down. But I am not depressive at all. It is just hard to ignore the twitches from time to time. If they get worse you automatically think about them.
christinasgirl123
Well-known member
LOL probably impolite to write in Emilyomouse here, but my answers are getting so monotonous that I bet most people on here dont even REALIZE that it is in a different language because they know the answer anyway 
christinasgirl123
Well-known member
No, because this is totally for plain old normal BFS as well.
I have some new symptoms that are scaring me. My fasciculations are very bad but they alway were. Now I feel something in my feet that feels like the vibration of a mobile phone. It is very rhthmic (pusative) and feels like electricity running though my feet. I am afraid that this are fibrillations because I can´t see twitches only feel the vibrating and there is no way to stop them. Did anyone of you ever noticed that? I hope that you can understand my description. My English is not so good. I read a lot about ALS and there is always mentioned that facziculations can also be benign but fibrillations never. I´m now very afraid that these vibrations are fibrillations because I can not see them.
You can not feel fibrillations. What you have is called (by me) buzzing sensation, I've had this few months in my inner arch. It buzzed for a second than stopped for a second and so on and on. Drove me crazy. But eventualy now I don't have it... in the foot at least, now my left thenar in hand (thumb muscle) is doing the same.It is sensory, it is not twitching. May be linked to neuropathy but never ALS. Appreciate the buzzing as it takes you away from ALS, as this symptom points you away from it even further.
Hi, thanks for your answer. If I say "rhythmic" I mean that it is like someone turn the light on and off. 5 seconds on, 2 seconds off, 5 seconds on. It is this regularly. Do you feel the same? Are you sure that this vibration has nothing to do with fibrillation? In the definition of fibrillation is always mentioned that single muscle fibres are firing and it feels like this. Like something is firing electric impulses in my feet.
Hello everyone, my toe movements on the right foot are so bad today. I don´t feel the twitches but my toes are moving so bad. It is not a short movement. It seems to be more like a spasm. I´m so afraid of it. It also happens while standing and it drives me crazy because this is totally new for me. Is this a bad sign?
Hi Matt, are you really sure this is nothing serious. My toe movements look like cramping sometimes but without any pain. The toes move slowly and sometimes they don´t get into the same position than before. I don´t really know how spasm look like but I heard, that this can´t be ruled out with an emg and is an upper motor neuron sign. The normal movements I know from my twitches are fast and short and these are different. Thanks for your help.
Brummer i get these all the time, its like my toes are playing the piano , definately spasm , i think mine could be related to lumbar root compression. How is your back? I never knew i had lumbar stenosis till i had the MRI and still dont get back pain. Nothing nasty imo.