New twitcher....

Information about how to manage or reduce the severity of BFS symptoms

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Re: New twitcher....

Postby Antologia on January 14th, 2014, 6:09 am

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 :)
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Re: New twitcher....

Postby emmie.s on January 14th, 2014, 8:15 am

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 :)
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Re: New twitcher....

Postby Antologia on January 25th, 2014, 2:22 pm

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.
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Re: New twitcher....

Postby leaflea on January 26th, 2014, 1:54 am

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.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby emmie.s on January 26th, 2014, 9:57 am

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.
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Re: New twitcher....

Postby leaflea on January 26th, 2014, 10:17 am

I agree with Emmie 100%. Well said and helpful.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby Antologia on January 26th, 2014, 1:55 pm

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: http://www.alsforums.com/forum/do-i-hav ... n-emg.html 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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Re: New twitcher....

Postby bobajojo on January 26th, 2014, 5:25 pm

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.

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Re: New twitcher....

Postby leaflea on January 26th, 2014, 5:55 pm

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.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby emmie.s on January 26th, 2014, 7:40 pm

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 germane to our interests here. They only cause confusion and spread misinformation.
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Re: New twitcher....

Postby leaflea on January 26th, 2014, 7:50 pm

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.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby RGB on January 26th, 2014, 9:23 pm

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!).

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: New twitcher....

Postby Antologia on January 27th, 2014, 3:12 am

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.
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Re: New twitcher....

Postby Little Lost on January 27th, 2014, 7:33 pm

`Hello
Such 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.
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Re: New twitcher....

Postby Antologia on January 29th, 2014, 2:18 am

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.
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Re: New twitcher....

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