Newly Experienced Twitching 24/7

Highlights Only
Antologia,Your post is full of misleading and completely false information. I don't even know where to start. First of all, you said "if you have bulbar onset, and they test your arms and legs, in the very onset stage maybe EMG will be clean." Oh really? That directly contradicts what the Mayo clinic told me. They witnessed my tongue twitching and didn't feel it was necessary to EMG it. They told me, "if there was something wrong in your bulbar region, it would show up when we test your limbs." I'll have to let them know that you disagree with them. And your doctor tells people not to worry about things even when they think its something to worry about? That's interesting. I wouldn't want to be their insurance carrier. Also, according to you, BFS can only be diagnosed after 4-5 years of twitching. That's fascinating. You should contact every neuro in the world and let them know this. Apparently, the Mayo clinic study is complete rubbish then. You know, the one that ends with this: "The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis." This one is my favorite, "She also said that twitching can be benign without being BFS or ALS. Sometimes they just don't know." I actually laughed out loud when I read this part. But the more I thought about it the more I actually agree, although not the way you intended it. Because this site is filled with anxious people. Some twitch relentlessly all day, everyday to the point where it can be called a "syndrome". Others notice normal levels of twitching and still end up here, when they are no where near the level of a syndrome and don't even have BFS. They have benign fasciculations, yes. But not a syndrome. So in that case, yes, there are benign fasciculations and its not BFS and ofcourse its not ALS either.I understand you are very anxious about your symptoms. But geezus, you don't have to spread your misunderstanding on a site that's filled with other anxious twitchers. And posting a link to an ALS site? Really? NOBODY on here has ALS so please don't direct people to a site for something they don't have.Common sense my friend. Matt
 
Thank you Matt. I am glad someone else had the energy to answer this, I knew someone would. Antologia, other problems I see in your post is that you use things found on the alsforum as "research." I used to go there also and realized many of these people especially in the section of "is this als?" have never been diagnosed. Their stories are totally 100% unreliable. I think many of us have seen those same posts to which you refer. If you look a little closer, it is impossible to make heads or tails of it. I learned to stay off this forum because it does not apply to me, and I am much better for it. Please do not bring things back to this site from that site, and not because I want any kind of false bubble or elusion of protection or false hope...I know many of us choose not to go there because it does not apply to us. Which leads me to another problem is that you generalize what your physician friend says to her patients as what most doctors do to theirs which is to -- Give False Hope. I would never want a doctor who did this, even if sometimes I think it would be nice. As an example, I have seen many dermatologists. I have had many moles removed. I am nervous about the result of each and every biopsy for days or weeks. Not one of these doctors has said "I'm sure its nothing, don't worry." They wait for the facts as they do not know and are willing to admit it. If they knew, they would not need to biopsy. Yet, every single one of these has come back as benign! Lastly, if you are going to talk about bulbar onset -- truly, it would not take 2-5 years for obvious clinical symptoms to present. Bulbar especially is a very rapidly progressing disease. Most with bulbar onset do not live for 18 months and often do not even lose the function of arms and legs before they die.
 
I second what Matt says, please don't post those links on this site. That being said, I took the time to read through the thread and the gist of it was that with types of mnd that have UMN involvement first (like bulbar) yes you can have a clen EMG for a while. However, fasciculatuons are LMN symptom of ALS. We are members of this board because we are complaining of fasciculations! If ours were connected to ALS they would show up on the EMG as something questionable. There can maybe be a hyper excitability phase of ALS which may involve twitching but that lasts for a very short time, as in months and not years. Even the two posters on that thread who stated they had ALS with clean EMGs said something about not really twitching, but they went to the neuro respectively for slurred speech and breathing problems. One said that her case was so rare that it was gaining attention of the medical community. So if truly you have swallowing issues, I would see how the EMG may not have been the only diagnosic tool to give you answers. Maybe ask about a barium swallowing test next time, and keep us updated.But again, please don't post those links of rare stories that are not really Emilyomousee to our interests here. They only cause confusion and spread misinformation.
 
Yes! Emmie, another very important and sometimes confusing point...The EMG will definitively without question show Lower Motor Symptoms, which is what all of us here have. Upper Motor Symptoms will not show on EMG, so if someone has the Upper Motor Symptoms first, EMG may be clean. A rare happening, and one that none of us should even think about. Lower Symptoms sometimes follow within months - not 2-5 years. Very important to clear up the confusion. ALS is a disease of BOTH Upper and Lower Motor Neurons. We actually exhibit the lower symptoms with twitching and (perceived) weakness -- EMG would quickly and clearly identify that.
 
I definitely don't agree with a lot of what is in Antologia's post, but I do agree with the post itself (in that it is valid and useful to discuss even if it isn't pleasant reading). Mention of "[BFS]... can only be diagnosed after 4-5 years twitching" is strongly suggestive of a neurologist who has read the Singh, Gibson et al paper and that has already been discussed here. A lot :) We know there is a whole spectrum of medical opinion, even among neurologists, and this is probably a fair description of one extreme. BUT we are talking about an extreme opinion about an already very rare presentation i.e. not very bloody likely!So anxious twitchers shouldn't read this post in isolation and think this one neurologist's opinion applies to them. The whole range of opinions should be considered and the vast majority of those indicate a benign prognosis when after a few months no other neurological symptoms (reflexes and weakness) are present. That range of opinions includes those of specialists who are widely regarded as the best there is (and a bunch of crazy people on the internet who have never developed anything nasty!).GlowGreen
 
Hi guys,First of all 2 things: please keep in mind that English is NOT my native language. Maybe the nuance of my post had been different if I had told you the story in my own language. Second: maybe our culture is a bit different then yours. In the Netherlands, all doctors try to calm you down. When I went to my doc for the twitching, she said: that is strange, I will send you to the neuro. But I do not think about ALS or something, so don't worry about that. That is how doctors in the Netherlands are, mostly. This does not mean they are not good doctors, it just means that there is a different way of approaching patients. I have heard a lot of stories the same as these examples, this doesn't only happens to me. This is just how doctors in the Netherlands are, I think it's culture. Try not to judge this, I do not think there is a good or bad way to talk to patients, it is just how it goes. And, keep in mind that how I tell this, it is not in my native language, so I will not tell the same as I would tell this in Dutch. Hope you all understand what I mean. That being said: it was never my intention to make people on this forum nervous or anxious. I just told you what my neuro said. In the Netherlands there is a blog of a women with bulbar onset who has lived for 10 years! And I read more stories of rare cases where bulbar onset presented as bulbar palsey and the EMG didn't pick up bad signs in arms and legs. What Emmie.s says is true, the forum link has stories but they can be explained because there were only UMN signs and no twitching. I said that directly in my post, it was just an example and that those cases could be explained why the EMG was clean at first. So it was never my intention to get people here panic. These are very RARE cases. I'm aware of that, and I hope anxious people on this forum are too. I'm not a very anxious person, but try to be realistic. I don't know why there is a difference between what neuro's say. I just thinks that what you all say is true, in 99% twitching with a clean EMG is not ALS and never will be in the future. In 1% of the cases there might be ALS/MND or some other neurological disease. In fact, the servey at this forum has 4 people developping ALS later on, I believe. I remember reading a post here form someone asking what the background of those cases were. Correct me if I'm wrong...I think my neuro doesn't think I have ALS, but will discuss in her team if there could be something else going on. And if she needs to do some more tests then only EMG and CK level to rule other things out. That's how I think she meant it.Of course I will keep you all posted.
 
`HelloSuch a difference. Here in the UK GPs tend to be truthful ( not alarmist), and do not play down the need for further testing.This is not a money making attitude as we don't pay for any medical treatment here. In certain areas in Scotland we have a culture of not going to the doctor unless you are falling down, "Oh aye I had a bit of a heart attack last weekend but I am just fine now" kind of attitude. If doctors say " go get that chest Xray done but it is probably nothing just a cold" some people would take that and run...i.e. put off ever going to get it. Honest some areas of Scotland the average life expectancy of a male is below 60 years (worse than some of the developing countries), genetics of heart disease, culture etc, a lot of those deaths are preventable. So doctors here tend to fall on side of caution and enforce what could be wrong. Playing down ailments may make the consultation go easier, but decreases the seriousness that the patient takes their condition.PS In this country only trained neurophysiologists can conduct an EMG (not neurologists). I see in other countries doctors can buy EMGs and set them up in their offices without anything other than an online course. This can't be true or is it ?pps These are general comments and I am not questioning the education or advice of your neurologist. It just seems strange she would come to this conclusion based on fasciculation potentials alone ( if you even had any show up on emg as often this depends on legth of time needle is in and position in relation to twitch). Were there perhaps other small findings somewhere which meant she couldn't rule BFS just yet, or as Emmie said perhaps get your swallowing reflex tested so to live in peace. I know you say you are not an anxious person, but it would take one hard person to live with a neurologist saying they cant rule out ALS for 5 years based on your exam.p sAnother point ( sorry) Do you think that because Fernando Rickson being recently diagnosed at 38 with bulbar onset MND , which was big story in parts of Holland has influenced her, making her cautious on dismissing someone with your symptoms. On dutch TV he clearly says he has no issues except for slurred speech, twitching and shaking hands. He also walks fine and uses his hands to sign autographs at the moment. He does recently need subtitles on his interviews.
 
That is a big difference, for sure. I don't think my neuro said that she could not rule out ALS for 5 years, I think she said that she could not diagnose BFS for 5 years. I don't know if that is the same, could be, but it doesn't have to be. Fernando Ricksen, that was a big shock in the Netherlands, true. He started with slurred speech and I believe he had twitches before that, but I do not know how long before the slurred speech started. I don't know if my neuro was thinking of his situation, but I don't think so. She mentioned that she just learned about ALS at a congres or something. So I think that might have influenced her more. Well, it's almost thursday and then she will call me about the talk in her team. I will let you all know what the outcome of that is.
 
So, the neuro called today...What she said was the following:They do think most about BFS, but she confirmed again that she could not diagnose it at this point. She offered me some medication, I do not know the name of it, but it was something to relieve the cramps, not the twitching. She told me I would get very sleepy because of that medication and I could not drive in my car, so I will not take this medication. I asked her to tell me a percentage to rule out ALS. She said it is 95% sure I do not have ALS. Because mostly when you have widespread twitching like I have, your muscles show problems on the EMG, even if you don't have weakness yet. But... in 5% of the (rare) cases you don't, so that is why she could not rule this out for 100%. However she did mention that in this hospital, they never had anyone with twitching, a clean EMG and then later on ALS. I do not get any other test at this point, mostly because my CK level was normal. Then they don't expect to find anything when they do more tests. In 6 months, I go back and we test CK level again. If that is okay, and I'm okay (no changes, only twitching and cramps), we do nothing. If I feel insecure, there are changes or my CK level is not okay then, they might do another EMG. For now, she and her team, mostly think this is BFS. She says it's very common in people my age, much more common then ALS at my age. And because you can become a hundred years old with this syndrome, they don't do a lot of studies about BFS. Sometimes the twitching will go away, but mostly it stays the rest of your life. So... I need to relax now and go on with my life. Which I will. Thanks for all your support. If anything changes, I will let you know.
 
That's good news, I am sure that the ALS percentage is perhaps a bit misleading though (although they are of course right to be honest about not being able to exclude it 100%).If they have never had a case at that hospital and the incidence is 5% then that suggests either they don't see a lot of twitching (<20)* or the percentage is a bit too high and just shorthand for "still theoretically possible".I was told pre-EMG that there was a 10% chance of it being ALS (we have similar presentations) so again that suggests some diverging views of what the likelihoods are.I don't think I am offering false-hope with either of the above points but can sense you are the kind of person who is able to deal with the very low level of risk. At worst, you are 95% certain of having a completely benign condition. Happy days :)GlowGreen* There is no need for any stats-geeks to point out the assumptions in this figure. It's good enough for our purposes!
 
I have no clue if there are many twitchers in this hospital. I live in a big city, but it is not an University hospital. The neuro said she did see a lot of people with twitching, but those stories were different then mine, I guess, because she talked about people (like medical students) who had a twitch now and then. I twitch 24/7 widespread, and it never stops. Well, I try to get if out of my mind, but sometimes it's hard because the twitching is there a lot, like today. I try to be realistic like you say, and believe I have 95% of having a very innocent syndrome. Time will tell. Hope I can write posts here in about 2 years or something :)Good luck!
 
Last time I was here was in February. Didn't happen much since, but just wanted to give an update on my situation, because it might be helpful for other twitchers. Still twitching really bad, but nothing else happens to make me feel anxious. The twitching is really annoying me from time to time, especially the thought that this will never stop for the rest of my life... It's almost a year now (23th of May) since this started. It's just that you can't stop thinking about it, because it is happening every 3 seconds. Will give an update in a few months or so. Good luck all!
 

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