Some very basic questions I cannot find answered anywhere

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Some very basic questions I cannot find answered anywhere

Postby JCurious on March 26th, 2014, 5:01 pm

I am sorry for having to ask what may be very basic questions, but I cannot find them answered anywhere. I will caveat that I know I am not talking to doctors here, I know it is all best effort opinion. But I am surprised I just can't get this information anywhere.

The questions are:

1) When I hear about ALS/BFS fasciculations - it seems that people are talking about these continual things, or continual for a period of significant time. But I am not sure. So the questions on this are: (a) Does a SINGLE TWITCH - say one every couple of hours noticed somewhere across the body even count as 'fasciculation' as people think of it. By this I mean I know a single twitch IS one, but when people say 'I have fasciculations in my left thigh' do people usually mean this thump-thump-thump that goes on for hours, days, minutes, or do they mean the once every two hours somewhere in their body thing as well? I just never see this point discussed. Do every-few-hours single twitches even fall into the 'BFS' or 'ALS' category people discuss here? (and if so - gulp - which one?)

2) My fasciculations came up after a bad virus, and *seem* to be dying down (very slowly) - or I am noticing them less. From five weeks ago where I felt about 40 of these a day, now I feel about 10 a day. Does this match anyone else's experience?

3) And, yes, yes, I need to listen to what my own neurologist says of course, who I see for a follow-up in two weeks, but does this appearance of fasciculations suddenly *everywhere* a month ago, followed by a gradual decrease in number of them, move the 'diagnosis needle' closer to ALS or BFS (again, as a best-guess 'hunch' of the better informed people here. By everywhere I mean one day nothing - then the bug - then I notice over the course of a couple of days in feet, calves, thighs, on my back, on my chin, on the left side of my jaw. Now it seems, each week, each day has a few less - on average - than the week before.

Please note that I do understand the importance of associated muscle weakness (real vs. perceived), the importance of an EMG, etc... but I am asking here about the fasciculations themselves, and not their context.

Thank you in advance for your thoughts.
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Re: Some very basic questions I cannot find answered anywher

Postby Scaredlin on March 26th, 2014, 5:52 pm

I am relatively new but I can definitely answer your questions about virus and frequency of twitches.

I had a virus in December when my cramping/spasming started and then another one when all the twitching started in mid January. I do believe that I was twitching, buzzing, vibrating a lot more at first and that now they are on the downslide. DUring the day I will only really notice big thumping ones or facial ones. Even at night, I can optimistically and fingers crossed say they are getting better- definitely not gone - but getting better or as you say less bothersome or I notice them less. I definitely noticed them a lot when I was cramping along with them. Felt like my body was under attack. Now I dont get as worried about the twitching on its own.

I would imagine the slow dying away of the twitches is favorable for us in terms of BFS and not ALS. But you will find many members who twitch with equal frequency as they did on day one, so thats no big deal with BFS if you don't stop.

WIth ALS, twitching is usually a late sign and it is said their twitches remain constant once they start (Im not sure how that is defined- same area or just every minute of every day) and very visible (there are some videos you can find on you tube of muscle fasciculating like crazy).

And yes, I do believe in medical terminology, a twitch is called a fasciculation, even if its just one. I dont believe it has to be the ongoing constant kind in order to qualify as a fasiculation. I will defer to more senior members on that.

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Re: Some very basic questions I cannot find answered anywher

Postby J4son on March 26th, 2014, 6:14 pm

JCurious,

welcome to the forum, and I will just answer your first question because I was also wondering the same for a while. So I will give you my personal opinion. Keep also in mind that I am not a doctor.

When I noticed fasciculation the first time nearly 5 months ago it was a very fast twitch at the rate of nearly 2or 3 per second, localized in my right deltoid muscle. It started after an hour of fast swimming session in a cold pool. That twitching episode lasted for 24 hours, then stopped and never came back. But in the meantime I had the famous meeting with Dr. Google and became obsessed with ALS. This obsession made me read more and more and suddenly I started noticing widespread twitching, like one twitch in the thigh, followed by another one in the shoulder, then the knee, calve, eye, abdomen, and everywhere else. It’s usually a single twitch followed by a period of no twitching (minutes to hours) then another single twitch in a new location etc. Personally I think that everybody has this but it is usually beneath the threshold of awareness. Many people, including my cute girlfriend ;) started experiencing them when I mentioned these single twitching, as they started focusing on their body.

Sometimes when my mind is busy or concerned with another problem I can spend a whole day without noticing any twitch but at the moment I start thinking again about twitching, the single random twitches come back.

I don’t think that when we talk about fasciculation in ALS, we mean a single twitch randomly hitting a body part, and that no one can see because the moment it hits it has already disappeared. It’s more focal and persistent.

In my opinion many people here do not even have BFS. A lot of people followed the following pattern:

1) A short episode of true fasciculation somewhere in their body, what we call a hotspot that stops and never come back.
2) Visit to Dr. Google.
3) Anxiety, fear or panic starts.
4) Over monitoring of every little sensation in the body.
5) Becoming aware of single random twitches all over the body.
6) Starting the non-stop visits to GPs, neurologists, radiologists, veterinaries, shamans, healers and other gurus.
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Re: Some very basic questions I cannot find answered anywher

Postby Xina535 on March 27th, 2014, 11:17 am

J4son wrote:In my opinion many people here do not even have BFS. A lot of people followed the following pattern:

1) A short episode of true fasciculation somewhere in their body, what we call a hotspot that stops and never come back.
2) Visit to Dr. Google.
3) Anxiety, fear or panic starts.
4) Over monitoring of every little sensation in the body.
5) Becoming aware of single random twitches all over the body.
6) Starting the non-stop visits to GPs, neurologists, radiologists, veterinaries, shamans, healers and other gurus.



These 6 steps are very right on. I have also been wondering if it's BFS or BS. I go back and forth (as my panic levels go up and down). I was on another forum when I shouldn't have been (guilty!) and I didn't read the thread but is was titled "BFS or BS?" and I wondered what that thread could have been about.

- Was it about what you said, that we don't have BFS, it's just these steps you mentioned?
- Was it referring to how the neurologists just throw the BFS diagnosis on someone because they can't seem to figure out what else it could be, and without giving any real explanation as to how BFS operates nor gives any treatments? Like BFS being a BS diagnosis.
- Could it be about how it's BS that we BFSers complain about all of these symptoms and fear, when there are real *** patients out there, dealing with the real thing?

Regarding the twitching. This is how mine goes:
I could have a few minutes without any twitching anywhere. During this time, I usually experience a buzzing or tingling somewhere, like activity still going on. Within a few minutes, a twitch will pop-up, anywhere in the my body, from face to butt to bottom of feet. That twitch can be a big one or a tiny one. It can twitch like 3 times and go to a completely different body part, or it can twitch like 3 times, rest, then 3 times again and repeat for an unknown amount of time with different patterns, so 3 small twitches once, then 5 big twitches, rest, and continue (so I would consider that a hot spot). There is no rhyme or reason. They happen whether I am laying or sitting. When I move that muscle group, they stop, but then they'll start up again at some point. I have been trying to get video clips of my twitches but it seems right when I want to record, they stop. Like they are playing a game with me.
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Re: Some very basic questions I cannot find answered anywher

Postby J4son on March 27th, 2014, 12:36 pm

Hi Xina,

I didn’t say that nobody has BFS or that BFS does not exist. If you look at some videos posted by some members here, it is obvious that they are twitching big time, most of the time and in a very visible way. For example watch the recent video posted by raindog. But since those twitches are not related to MND, they are considered as benign and the name BFS is in my opinion an appropriate name for this condition.

Personally I was talking about another category of member here, who do not have these very obvious and continuous fasciculation. These people self-diagnosed themselves with BFS or are told by a doctor that they have BFS although most of the time they are unable to show their twitching because it’s the kind of one single twitch here and there from time to time that disappear as quickly as it came. Usually the awareness of those single twitches comes after a short episode of true visible and focal fasciculation that last for a few hours to a few days, followed by Googeling the symptoms and starting obsessing about motor neuron diseases.

I wonder if this second category of sufferers can be called BFS, since at least in my experience most of the people I know got them. In my opinion lots of us were twitching before the ALS phobia started, but our brain used to ignore these random single twitches because at a subconscious level it wasn’t labeled as a threat. After visiting Dr. Google the nervous system becomes extremely tuned to any single change in the body and to every little twitch because the signification of a twitch changes as it starts being perceived as a threat. I had the same experience with Tinnitus. When I was in the middle of my tinnitus panic I used to hear my ears ringing even in the middle of a crowded street. Today years later and although my ears rings as strongly as before, 95% of the time I don’t hear the tinnitus at all because my brain is not considering the ringing as a danger anymore, and so becomes capable of ignoring it.

Xina plz stop visiting ALS websites, it’s not worth putting our lives on hold by living continuously in fear for a benign condition.
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Re: Some very basic questions I cannot find answered anywher

Postby Xina535 on March 27th, 2014, 1:32 pm

I didn't visit ALS sites, I was googling fibrillations (or started to) to try to learn about them. I just saw the header of that forum thread, and wondered what they could have meant with BFS or BS, that's all. I was actually told by my therapist that I should visit these sites, so that I can make myself MORE scared, and document what happens to my body and how I react. I personally believe that I shouldn't go there, but I have to get some of these situations written down to bring with me to my appointments. I wrote about that in a different thread.

I also had tinnitus for a long time. I wasn't scared of it, it just decreased my quality of life. I went to a clinic for 2 weeks for it, which is where I learned progressive muscle relaxation, and since then it's been gone!

It is known that there is not so much known about BFS, so I do wonder how it can be called "harmless" when it obviously does a number on us (anxiety, pain, cramps, etc). Ok it is not terminal, but I believe it's much more traumatic as the profession describes it.
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Re: Some very basic questions I cannot find answered anywher

Postby JCurious on March 27th, 2014, 3:43 pm

I want to thank everyone for their comments. My 5-20 twitches a day sound like little concern!

Here is an interesting point: Early this morning, I learned a dear friend has (early stage, easily treated) thyroid cancer. I have been quite busy learning about this, figuring out how to help my friend, etc.

I haven't noticed one twitch.

Perhaps that says something about the twitches I am facing.

In no way am I discounting the horrible constant twitching many of you face; but perhaps in my case it is the fact that I noticed twitching a month ago, read up on it, and then have noticed every one since is to some degree simply because I am focusing on them.
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Re: Some very basic questions I cannot find answered anywher

Postby J4son on March 28th, 2014, 6:08 am

Xina535 wrote: I was actually told by my therapist that I should visit these sites, so that I can make myself MORE scared, and document what happens to my body and how I react. I personally believe that I shouldn't go there, but I have to get some of these situations written down to bring with me to my appointments. I wrote about that in a different thread.


Yes that’s called exposure therapy, a technique often used in CBT to help desensitizes people from their fears. Usually this technique is used depending on the context. For example if you fear ALS to the point that you start avoiding everything related to this disease like websites, TV program, article in a newspaper so yes starting an exposure therapy might be a good way to conquer your fears. On the other hand if your worries for ALS push you to spend your time on ALS websites or on Google seeking comfort and assurance, then these kinds of behaviors are called “reassurance behaviors” and must usually be banned. For example 15 years I’ve passed through a very hypochondriac phase of my life. All my free time was spend on internet seeking comfort. The strategy that cured me at that time was to cut-off completely from internet. But I am sure your therapist knows what his is doing since he is a professional in that fields and he know your case better than any one else.

Xina535 wrote: I also had tinnitus for a long time. I wasn't scared of it, it just decreased my quality of life. I went to a clinic for 2 weeks for it, which is where I learned progressive muscle relaxation, and since then it's been gone!


I became scared of tinnitus when I started reading freaking stories on internet about people becoming mad, or killing themselves because of the continuous torture brought by the non-stop sound in their ears. Then with time I understood that I was acting like Bucephalus the horse of Alexander the Great who was scared to death by his own shadow.

Xina535 wrote: It is known that there is not so much known about BFS, so I do wonder how it can be called "harmless" when it obviously does a number on us (anxiety, pain, cramps, etc). Ok it is not terminal, but I believe it's much more traumatic as the profession describes it.


Benign doesn’t mean harmless. I had a benign bone tumor in my right foot that was inoffensive to my health. Didn’t kill me, didn’t stop me from doing anything, didn’t change my physiological parameters, but the pain from it that was unbearable for two years and a half until got rid of it, plunged me in a deep state of nervousness and misery. BFS, tinnitus and even falling in love are benign conditions, but can be very harmful depending on people’s reaction.
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Re: Some very basic questions I cannot find answered anywher

Postby Xina535 on March 28th, 2014, 3:50 pm

I gave been told by my own doctors here that BFS is harmless (German = harmlos). That's where I got that term, and anyway, we do feel the same about it.....it's not harmless, there are effects which reduce quality of life.

About the therapy, there is no way that I visit the ALS sites looking for reassurance. I hate going to them. Scared of them for sure, and scared to google about ALS at all. I come HERE to look for support, but I am not scared of this site.
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Re: Some very basic questions I cannot find answered anywher

Postby ShawnW on March 28th, 2014, 5:42 pm

I believe it's the anxiety that reduces quality of life. I think there are associated symptoms that are more linked to anxiety than BFS. BFS gets blamed for much when I believe anxiety is the culprit.
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Re: Some very basic questions I cannot find answered anywher

Postby HypoKev on April 10th, 2014, 2:49 pm

My question is closely associated with these questions, but I cannot seem to find an answer...

I don't worry about ALS, but I do definitely worry about Multiple Sclerosis.

I have muscle twitching all over my body, and I have read that people with Multiple Sclerosis experience muscle twitching, but I can't figure out where or when...

Is it an initial symptom of MS?

Does it only occur in affected muscles and muscle groups?

If I am experiencing twitching all over my body and it's my first and only symptom, should I be concerned?

Any advice or input would be greatly appreciated - Thanks!!
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Re: Some very basic questions I cannot find answered anywher

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