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To all 24/7 twitchers

Postby Pole on December 12th, 2003, 10:09 am

Hello

I wonder if it is really possible to twitch 24/7 in the same spot. Is your muscle twitching every second?

If answer is YES I heve a second question: how many of you were be able to show your fascics to a neuro? If you were not be able to do that does it mean that your 24/7 twitches stoped in neuro office????


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Postby Ray on December 12th, 2003, 5:55 pm

Hello Marcin, you would've read in many of my posts that I twitch 24/7 in my calves and feet. The twitches do not stay in one spot but spread throughout these areas constantly. I would say 99.999% of my twitches are single fires before they move somewhere else. Yes, during my EMG my Neuro noticed the fasiculations he even turned up the speaker on his test unit and I could hear " POPS " he indicated that they were the fasciculations. I know this doesn't answer your question exactly but I just wanted to post my experience.

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Postby John_JR on December 13th, 2003, 12:38 am

Pole,

Unlike Ray who gets single fires, I classify my twitches as type-1 and type-2 twitches. Here's how I define them:

Type-1: These are random muscle fiber twitches that occur often through out the day. They can occur anywhere you have a muscle on your body. They consist of a "Morse code" pulsing sensation and usually twitch anywhere from 1 - 30 times and last less than one minute in duration, then stop. Some time goes by, and then you will have another one in another place. This goes on throughout the day and can happen from a few times a day to hundreds of these per day, sometime getting two or three at the same time. Stretching or moving your body can provoke or agravate more to occur.

Type-2: Same random sensation as type-1 but these hang around continuously for hours (even days!) at a time. I notice people like to call them "hot spots" or hot zones because they seem to always come and go. Nothing you do make them go away. You must wait it out. These I have been able to show my neuro.

I think you bring up a very important question. If each of us better defined our twitches we might find that there are several "groups" of BFS'ers here, and an equal amount of unknown reasons why we twitch.

I do want to add a recent discovery in regards to the type-2 twitches. In my case I have found that joints and the spine (back of neck) is where the real nerve irritation is occurring. Proved this many times during type-2 episodes where torque or bend my neck or thigh a certain way temporarily subsides the twitching. Even a heat pack to the back of the head/neck area has helped facial type-2's often. In my case I believe it's due to a microbe (parasite) festering in these areas. Lyme is an obvious candidate, but I'm not quick to rule out another yet-to-be-discovered pathogen or organism. What ever it is it is spreading throughout the population by the looks of this web-board. So if anyone reading this post recognizes my definition of type-1 and type-2 twitching, you must consider what/who you have come into contact with.
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Postby Ray on December 13th, 2003, 7:37 am

Hey John, I liked how you classified the twitches into two groups (I think we could define more groups, perhaps a survey might help). I too have also noticed that the way some of us twitch is different from each other although there are often similaritites. In regard to your observation about this spreading throughout the population I tend to think of it as more people are using the Internet to do their research. I also think with the advent of newer drugs testing hasn't conclusively ruled out possible side effects even though regulations are in place.

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Postby Jenn311 on December 13th, 2003, 10:21 am

Great post John...

I get both types as well. I bet everyone here does, come to think of it. But does anyone have a repeat hot spot, that lasts for months on end, coming and going?

Also, interesting theory about the spine. We need more thought provoking posts like that.

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Postby John_JR on December 13th, 2003, 3:10 pm

Ray,

Up until a year ago I would have agreed with you and I would have never made the "spreading throughout the population" comment. But as mentioned in my previous post, my wife has come down with the exact same BFS symptoms. This has been my biggest revelation, yet my biggest tragedy to give this to a loved one. The only possible way this could occur is through a medium of transmission. Let me be clear. I don't propose the entire mystery behind BFS is pathogen related, rather that some are cases related, like in me and my wife's case and possibly others who visit this board.

One way to find out is to accurately identify and categorize the types of twitching we all experience. Just off the top of my head I believe there are two (or more) main types of BFS people who post on this board. This is part of the problem because the groups unknowing debunk each other’s theories and we never make progress of what is truly causing our suffering. Survey would be great! I think a survey website would be very beneficial. You would be able to identify your "group" very easy.

Jen, thanks. Yes I get those repeat hot spots too. These are my type-2's and I really hate them. I have one in my right forearm for years that comes and goes whenever it feels like it. In fact, I know these so intimately that I should give them all names!
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Postby Pole on December 15th, 2003, 2:33 am

John

your type-1 is EXACTLY like my twitches! I also noticed that stretching a muscle can provoke twitches to occur.

One more question for you: when your neuro saw your type-2 twitching what did he say about them?

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Postby John_JR on December 15th, 2003, 5:11 am

Marcin,

Well, he didn’t say much I already knew. He said it was definitely the nerve and not the muscle itself that was causing it. He said nerves have an “idle” potential when at rest. It appears that the nerve is having trouble “resting” so it “flickers” like a faulty florescent lamp sending signals to the muscle. I told him that some of these type-2’s were traceable to the back of my neck, so he ordered up a MRI at the time (which came back normal BTW) to look for pinched nerves or deformities. This all occurred before I made the transmission link.

Hey all, I just wanted to add another “Type” to the mix.

Type-3: These are not muscle twitches at all, but rather sensations as in pain that follow the same behavior as twitching. I get these pin pricking sensations that feel like someone is poking my skin with a little needle and it has the same "Morse code" like patterns. What I assume is going on here is that not only the nerves going to muscles are mis-firing, but also nerves going to the brain (sensory nervous system). These feel sometimes “electrical” in nature. Some are so slight that it feels like a small flea is biting me. Others are very strong and stabbing to the bone. I know these are all “fake” sensation as these sensory nerves are firing at random. I notice that on “bad days” where I experience hundreds of type-1’s, these type-3’s are also more noticeable. Strangely, the Type-2’s seem more prevalent to occur on “good days” or when the type-1’s are less numerous.

Whatever this thing is, it is really screwing with and destabilizing the peripheral nervous system. I also find it interesting how are these Type-1,2,3 all wax and wane. I thought it was related to my diet, something I eat, but if it is some type of “infection” then good and bad days are your body trying to fight it.
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Postby garym on December 15th, 2003, 4:58 pm

John,

Another thing to consider along with the infectious idea, is environmental causes of the twitches. If your wife and you are being exposed to some type of neurotoxin, that could explain why you both have the problems. You might be more sensitive to a certain toxin and become symptomatic earlier than your wife. There are an endless number of compounds that have been linked to neurological problems. Aspartame is the latest I'm looking at. Heavy metals can also cause similar problems.

Just a thought.

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Postby John_JR on December 15th, 2003, 8:08 pm

Gary,

I hear what you're saying, and I've been testing that theory for the past 15+ years where my environment has changed (somethimes drastically - Florida to Hawaii, US Navy, overseas, etc...) and also tried radically changing my diet, soap, etc... I mean I really altered my lifestyle in many ways, never finding a link. Now that I have "transferred" this disease to my wife (a link !!), I'm now looking into mediums of transmission (like bacteria or virus). I don't think it is a virus because viruses tend to use healthy cells for their replication process, hence destroying these cells. Such damage should be detectable. However, bacteria can reproduce by self-division. Furthermore, researching Borrelia burgdorferi spirochete bacteria show they exhibit impressive defenses and hiding techniques, which support chronic long-term infections. One would have to become a microbiologist to understand it all.
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Postby Pole on December 16th, 2003, 3:21 am

John,

it's very important what your neuro told you that it was not muscle but nerve problem. Did he tell you what can be a reason of this kind of nerve activity?

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Postby John_JR on December 16th, 2003, 4:04 pm

Marcin,

My neuro is actually pretty cool. He explains a lot, but himself has not offered an exact diagnosis for the twitching other than classifying it as BFS (Syndrome meaning unknown). As far as why the nerves are twitching, he said numerous things, anywhere from mineral ionic imbalances, to hormonal, to nerve damage/irritation, to major neuron disorders like ALS (which I all tested neg), the list goes on. He said it's not easy to determine a cause as it might not be directly related to the twitching itself. An analogy would be like headaches. We know how headaches occur, but there are countless reasons why people get headaches.
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Postby Neuromancer on January 8th, 2004, 5:45 am

Greeting fellow tinglers,

I'm new to the site and very pleased to find it. I experienced bfs about three years ago for one week after ingesting some psiloycbin and absinthe. For about two years before that I had experienced the "Type 3" isolated/localized pins and needles sensations (hands and thighs), which would sometimes last for a week or more but I didn't know about bfs at that time. Then the 'shrooms and a week's worth of severe calf-scics that disappeared as quick as they'd come. Three years later (this past summer) I was trying phenylalinine as a smart drug for less than a week and the fascics roared back and have been on now for six months, first in calves, now in shoulders and face, though only as "Type 1". I never get "Type 2".

My neuro is very cool and his partner in practice gets them. Apparently they're rather common among med students and docs (which is probably due to higher reporting, more exposure to pathogens, mental/neurological stress, or some combination thereof). He's in Baltimore and is in touch pretty frequently with leaders in neuromusculature at Hopkins and The University of Maryland.

He said something interesting recently when I was asking about meds which was that current thinking is that muscles basically fasciculate all the time at the cellular level. There is constant, imperceptible activity of all the motor neurons in a given muscle group. What happens in bfs, this thinking goes, is that a number of neurons become coordinated (million dollar question: why?), and the activity becomes syncopated and noticeable. This is why it is so hard to turn fascics off. The only way to do so would be to turn off THE WHOLE MUSCLE. Also it would explain a little why some of the heart rhythm meds seem to have an effect. Arhthmyia is all about the COORDINATION of muscle tissue. Also it may be that caffeine, which seems universally to make fascics worse, excites ALL motor activity and if we hypothesize that it doubles the intensity of all activity, perhaps it doubles the number of noticeable fasciculations as well, and makes them more intense.

Beyond this, my own supplemental theory, and I'll post this somewhere more pertinent tomorrow, is that - as in Parkinson's - dopamine is playing an important roll in bfs. In my case, phenylalanine, which precipitated my symptoms, is a dopamine precursor, and nicotine which is reported to make fascics much worse - and does in my case in the rare instances I smoke - also raises dopamine levels. Many folks also report an increase in fascics after excercise and excercise has the same effect: the 'runner's high' is all about dopamine.

According to the Mayo clinic something like twenty percent of us present with an infection and fever of some kind in the weeks leading up to the onset of symptoms (I did not). Question: does the psychic delirium often associated with fever involve dopamine levels in the brain?

Finally, Mayo suggests 70% of people experience fasciculations to one degree or another. (I find this a little hard to believe but I think they ARE talking about something more severe than, say, the random muscle spasm.) Even assuming the percentage is lower, a married couple - especially married a long time - could have a better than even chance of seeing symptoms in their spouses.

My neuro says he's seen a lot of patients clear this syndrome after a few months and others who were either never particularly bothered by it (perfect mental health must be great, don't you think?), or focused past it.

Interestingly, I have a little tinnitus too (an old rock and roll injury) but the tinnitus never bothers me when I'm fasciculating.

Pick your poison.

Good luck all.

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Postby Jenn311 on January 8th, 2004, 10:22 am

Interesting post!
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