Newly Experienced Twitching 24/7

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Kangarudin

Well-known member
Hello, I'm new here. I've been experiencing twitching everywhere 24/7 since may 2013. At first wait and see, but in october went to the neuro. He didn't find anything with his exam, but did order an EMG and bloodtest. I was on a waiting list for that, half January I will go for the EMG. I'm pretty nervous about ALS, as most people are at first. Neuro mentioned BFS. I'm not sure. I also have an increase of saliva and sometimes troubles swallowing. But that's all....I'm glad to find this forum, because on the ALS forum people get tired of us twitchers without a diagnose. They don't understand our fears....
 
Totally understand your fears. However, I would be doing cartwheels if I had been twitching since May and not had any weakness or other real symptoms (I'm only 4 months into this but many will say I should be doing cartwheels as well--clean MRI, nerve tests, clinical exam). If you are 7 months into this and you aren't falling down, tripping etc., and you can still do everything (walk, run, use your hands etc) you are fine. Your EMG will be normal and hopefully it will bring you peace of mind. If you have anxiety it will explain your swallowing issues. Time is on your side.
 
If swallowing is your only other associated symtpom and it is going on since MAY, that is great. Bulbar moves even more quickly than limb, so you definitely can start to relax. The lady I know who had bulbar onset was given 12-18 months and was obviously disabled at six months and died in 18 months and that was considered a slow progression.
 
Well, the twitching started in May. The swallowing in October. I have been experiencing some small issues like balance-problem when walking the stairs, increase of saliva, tired arms and legs, tired neck, tired tongue when eating things like pancake, tired muscles in my face when laughing and so on since a few years. I'm not really sure if this is good. I read about people with ALS who experienced the twitching for 2 years without anything else, and then suddenly they got a footdrop or they couldn't whistle anymore and then they were diagnosed with ALS/MND. I know this is rare, but it happens.Other things I have, this I have since May, is jerks, pins & needles, buzzing sensations and itching. They say that doesn't point to ALS, but I also read that there are a few ALS-patients who do. So, no relieve yet for me. I get the EMG in January, hope this is good. That won't be the prove nothing is wrong or that I won't develop ALS/MND in the future, but it will mean they can't find anything pointing to ALS at this moment. Which will be the best news I can get, of course.I wonder, how many people are hear that have twitching for a long time and got diagnosed after a few years? Or don't they come back to tell?
 
Anything is possible. I guess I could get hit by an asteroid this afternoon but it's probably not likely. Have you had any blood work done? Low vitamin B12 and D cause neurological symptoms. I discovered I was low vitamin D (19--should be above 50) about 10 weeks ago and have been supplementing with 50,000 UI a week since then. My symptoms have improved but not fully. Also, and thyroid issues? I would also suggest you work on your state of mind. Anxiety and stress can wreak havoc on the body--you may not think you are stressed or anxious but your posts tell a different story.
 
Hello, thanks for all your answers and reply's. I don't think you ar harsh, I understand that you are all trying to help, which is fine.It's true, I don't feel stressed. At first, I wasn't afraid at all. I thought I was fine and it was nothing. But when the twitching didn't stop and I was experiencing other things, then I got worried. And of course, being afraid does strange things with your mind AND body. I know that you all are right about that. I do really feel the needles, jerks etc. They are certainly not in my mind, that's for sure. I never had them. Suddenly I did. I was never worried before about my health. The swallowing and increas of saliva, that's something I'm not really sure about if it's related to my fears or not. It could be. I hope you are all right about the EMG. That this will be clean. Keep you all posted.Thanks for the support until now. It really helps to share.
 
I've experienced the saliva/swallowing. I actually had that before twitching. The twitching came after a search on swallowing problems and excess saliva led to ALS fears. Oddly, once I became focused on the twitching, the saliva and swallowing problems went away. They have come back a couple of times since, but they always disappear when I'm not thinking about it. It seems whatever "symptom" is my greatest focus, is also my greatest problem at the time. The symptoms are certainly not "imagined" they just see to somehow manifest the more I focus on them.
 
I'm having excess saliva issues and a feeling of a thick tongue. I've had it before so I'm hoping it's anxiety. It's a bit better today but yesterday was a nightmare. I think it's true that if you are hyper vigilant about your body you will start to feeling things that you normally would not notice.I'm getting anxious because when I lie on my back I find it harder to talk. I noticed it the other day when I was lying in my son's bed reading him a story.I know my anxiety is bad at the moment but hopefully that's all it is. Still twitching!
 
The focus on ALS makes you feel more then there is actually going on in your body. That's for sure. At the moment I'm also experiencing swallowing problems. Sometimes the swallowing reflex doesn't work for a minute or so and I also like to have troubles with saliva that goes wrong when I swallow. It's not really choking, however I do cough when that happens. The twitching is still there, just like the jerks, pins and needles. I wish it would stop, so I could stop worrying....I hope I can get this out of my mind for Xmas. Merry Xmas everybody here.
 
Hi, I'm new to the site but not to the ever present "Twitching" I have been suffering with the never ending symptoms for 4 years now. I have not been diagnosed with BFS, or for that matter anything else. Dispite having seen 3 Neuro's. I have for years suffered from depression and anxiety, sometimes to the extreme. So I suppose it could be that that's causing all my problems, I just don't know. At times it's physically draining, but the emotional side is much worse especially when no takes you seriously. I have spent the last year realitively symptom free, except the minor twitch here and there. Just before Christmas every symptom going, twitches, aches, stiffness, migrating numbness, tingling etc. It's like Hell.
 
Hello I'm Batman,Four years is a long time... If you don't have any other problems, this is a good sign. Like weakness, I mean. Strange that after a year without problems they suddenly started again :( However, it seems to be anxiety, as you say. I assume you did have an EMG, did you?I'm still waiting for the EMG. I have it in 2 weeks, if that is okay, I will stop worrying. I can't imagine this won't give any sign of ALS/MND with te problems I'm experiencing. Unfortunately, I do have some other problems beside the widespread twitching. I have light swallowing-problems, like coughing during diner sometimes, mostly with bread and sometimes the swallowing reflex doesn't work. I also have increase of saliva and I'm biting my cheek. I do not feel twitches in my tongue, but I do see a very light shivering when I stick my tongue out of my mouth. My tongue and jaw feel tired when eating. It could all be anxiety as well, the swallowing problems, I know that (and I hope they are!). The EMG will tell if it is or not. Good luck for you!
 
Yes it can be anxiety. I have the exact swallowing things. But they wax an wane for periods of weeks. Please keep this in mind and try not to worry. Please post EMG results. Either way. It is important to us. My prayers go with you as you go. I have my neuro exam on 1/8. Had a clean EMG 12/5.
 
I certainly will let you all know how my EMG was. I was just thinking today that it would be good to get a section on this site with all the complete stories. Because on the forum you need to search the names to see the outcome. If you have the whole story complete, you don't need to search. You can complete the page every year, if needed.
 
So, this morning I had my first EMG. It wasn't very painful, so that is one thing. They put needles in 8 muscles: biceps, hand, thigh and shinbone, both sides of my body. The neuro was a doctor in training, but some other neuro came half the EMG looking how she was doing. They didn't say much, I get the results next week. But when I left, she said it was all looking good and I didn't have to worry too much. When I was lying down, I felt twitching everywhere, except the parts they put the needles in :(Of course now I'm wondering: how accurate will this EMG be? I think I will make a list of questions for the neuro next week. So he can make my doubts go away :)
 
That's excellent news, I'm sure the EMG will be clean except for maybe a fasciculation here and there which is normal. Please take the good results and believe it when your doctor tells you you're fine, because you are. EMGs are highly sensitive and can pick up changes months before patients even notice them. Congrats :)
 
I had my talk with the neuro last wednesday. She told me the following:There were no signs at the EMG pointing to ALS/MND or a myopathie. My CK level was 74, which is absolutely normal. For now, that is very good news. However, she did tell me she could not guarantee this is not the beginning of ALS. In some cases, the EMG is clean, the CK is clean and people still develop ALS in the next 2-5 years. But, she also told me these cases are rare. In most cases, when people twitch because of ALS, the EMG shows signs. She also talked to me about BFS. She could not diagnose that, because this can only be diagnosed after 4-5 years twitching without any other problems. Or at least that is what she told me. If I still twitch in 4-5 years, my EMG is clean and I do not have muscle loss or atrophy, it's probably BFS. She also said that twitching can be benign without being BFS or ALS. Sometimes they just don't know. It can be ALS, but it is seen in completely healthy people as well. We'll just have to wait and see. She told me she would discuss my case in her team this week. Because I do have some strange symptoms like pins and needles, jerks, increase of saliva and sometimes swallowing problems. This is not clinical, she couldn't find this when she did some test, but it could be because of some disease other then ALS. She wanted to talk about this in her team and see if they need to do more tests to find out if there is some other thing going on. She told me they don't do more tests very often, because mostly they just discuss if it is worth the costs. Most of the time they think it doesn't in my country. If they won't do any more tests, then I will have a follow-up appointment within 6 months, she told me. Then I can tell her if there are any changes and maybe they will do another EMG at that time. She will call me next week on friday about the outcome of the talk in her team. So, I'm not relieved, but I do feel the neuro is taking me serious and that feels good. She was clear this could be the very beginning of ALS, but the chance of that is small, because the EMG and CK level were fine. She also said that there might be something else going on, but she is not sure if more tests at this point are worth the costs (because mostly when there is no clinical evidence, more test show nothing). So, no BFS or ALS at this point. Just nothing. If I have any news, I will let you all know in this thread, because I think it is good to know the outcome in time.
 
I would have to think of all the 4500 or so users who found this site over 12 years there would be more than a few who would have developed ALS after 2-5 years. Obviously very, very rare. Would be nice if all the neuros would get together and get on the same page. Please do report back what your neuro's "team" says. Maybe someone on the team has more experience with ALS than him/her.
 
Really, 4-5 years of twitching before she can make sure it's not als? I call b.s. Most people with als die within 5 years. Moreover, I've seen 3 neuros, and 2 neuromuscular disease (als) specialists who administered my 2 EMGs. They ALL said that BFSers had to wait months, as in 6 months, not years, for a bfs Rx. Actually one doctor who was like 85 and an als specialist said that when people come in complaining of twitching, it's almost always benign and when it's not the clinical or EMG will reveal abnormalities straight away. Perhaps you should question your neuros certifications. The top als researchers in the world responded to Helen's (forgot her username) email and pretty much said in their opinion 8 months of twitching and nothing else, then it's benign.As for these tales of twitches preceding als for years and years, did anyone ever occur it was likely BOTH bfs and als? Every neuro says that bfs is pretty common. That's great news that everything came out fine, and I for one think your swallowing issues are due to anxiety. I know someone with bulbar and it didn't start with twitching or swallowing issues, but rather she woke up one day and was slurring, as if she had a stroke overnight. Bulbar is so rare, even more so if you're under 50, and it progresses so quickly that it's unmistakeable to any trained neurologist. Also, pins and needles are parasthesia and they are common with bfs and point away from als. Myoclonic jerks are common with BFSers too.
 
Hi Leaflea and Emmie.s,I understand what you are saying. My neuro told me she just did a study/congres about ALS. She did mention that these cases are very rare and that it was most likely benign twitching. But she also said there are some cases where people did develop ALS or already had ALS, but EMG showed nothing in the beginning. I did some research myself today and I found this thread: with some people with clean EMG's at the beginning (the experts could explain why they were clean later on, it's just to illustrate that this happens sometime) I also found a Dutch article where 2 people with twitching had an EMG which was normal. They followed them for 18 months and after that period the EMG was dirty. I think those cases are very rare, I think that what you and most neuro's say: clean EMG is no ALS is correct in 90% of the cases. But. If you have bulbar onset and they test your arms and legs, in the very onset stage maybe EMG will be clean. I think this is why my neuro says to have a follow up appointment within 6 months. She also said that the pins and needles point away in ALS (but some cases describe pins & needles) but it does maybe point to some other disease. That is why she wanted to discuss my case in her team, to find out if they should do more or other tests to maybe find something else, or just wait and see. I agree there are so many neuro's that say different things. I heard neuro's say twitching in ALS begins at one place and then goes widespread. In my research today I found more then one article saying that especially widespread twitching is more likely ALS then isolated at one spot. So what is true? I do not have a clue....What I do know: in medical health they spent a lot of time trying to let people don't worry to much. I have a friend who is a doctor, she told me ones that if someone enters her room and tells the story, the first thing she does is thinking: is this something serious and lifethreatening, ore not? And when it's not, she tries to give people medicin to help them get rid of their problems or try to make them relaxed. Like when they have a mole which is looking a bit black or something, she says: don't worry, this looks good, you can relax. Even when she thinks the mole is malign, she let someone go to the hospital for more research, but she does say it's probably nothing. So I thinks it's a neuro's job to tell us not to worry, because if they can't find anything clinical, it's probably benign. The rare cases when it's not, will be found out later and it's better if those people didn't worry all the time. That's how I see it. But it does happens sometimes....I will keep you posted. Very curious myself in what the neuro-team will advice her for my case.
 

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