EMG Results Ignoring Twitching?

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Alonzo

Well-known member
I think I might be onto something here. I was reading more posts about people that have had EMG's and I have seen a lot of people say that when they had their EMG done, they knew that they were twitching at the time, but the EMG didn't pick it up. There are two recent posts on this forum about this very thing and I have seen many people say this same thing in the past and on other forums. (yes, I know other people said their twitches showed-up on their EMG's, but run with me here, we might be onto something).

Think about what an EMG does and what it is looking for before we go further. EMG's detect nerve conductivity and activity. NERVE activity, get it? If people have been getting EMG's and they KNEW they were twitching DURING the EMG test, yet nothing showed-up, that would mean that the twitches they were experiencing at that moment were NOT being fired by (or through) nerve conductivity, right? I hope I'm right anyway?? :eek:

It has been VERY common for people to have slightly elevated CPK levels when they get blood tests, myself included. CPK is a liver enzyme which shows liver activity) and it can certainly cause "things" to happen in our bodies, just like Thyroid enzymes can cause twitching, which is why doctors first look for Thyroid problems in the first place.

Maybe (and this is just an idea here) we have been looking in the wrong place this whole time and that twitches are in fact NOT nerve or brain related at all, and are in fact enzyme / muscle related. With elevated CPK levels, this "could" indicate that our livers are working a little overtime trying to filter-out this mystery substance!

This is true of many substances. When we get low on Potassium, we get cramps. That's why doctors tell older people, who's bodies don't absorb nutrients like they did when they were younger, to eat more bananas to help remedy night cramps. I know my wife has to do this sometimes as well. Maybe what is happening is that our bodies (somewhere) are making / releasing some type of enzyme that gets carried throughout our blood stream and it absorbs randomly in our muscle fibers. I have a whole study on this already and it DOES certainly affect how muscles react and perform. It was pretty clear about how this works and how it can affect muscles. Muscles are DIRECTLY affected and "fed" by sugars, carbohydrates, enzymes and certain other nutrients and with too much of one or not enough of another you can get anything from fatigue, cramps, lack of energy, "weak feelings" tremors and so on!

Ever notice that we all seem to get more twitches after drinking alcohol (the next day) or we feel bad or get "drained" or sore after we exerecise?, which is commonly known as "exercise intolerance". This makes sense that if our livers are trying to filter-out excess alcohol or other chemicals / enzymes naturally produced / released in our bodies by exercising, that the liver just can't keep-up and we feel worse and have more symptoms. I isn't nerve related at all.


So, this would explain why neuro's can't find or detect anything on their tests because there is nothing to find neurologically, it would also explain why we have good days and bad days depending on how much of this substance is being produced / released / absorbed into our bodies and why we all have pretty much the same symptoms yet also have offshoots of other symptoms because everybody reacts differently to different chemicals / substances!

This would also explain why we sometimes have tremors, weak "feelings", vibtarions, rubbery legs and so on, depending on how much of this mystery substance is being produced and absorbed by our muscles. It probably "stores" like fat cells do, or maybe even IN fat cells that surround our muscles for a short periods, and that would explain why we have lingering twitches sometimes. That muscle might twitch, thump, jump, vibrate or even ache depending on how much of thsi substance is stored in it or the surrounding fat cells.

Some people may get muscle cramps if too much of this enzyme get released and absorbed in certain muscles and it will last until it dissipates,(the liver working overtime again trying to get rid of it) and other's don't hardly react to it at all. Just like Aspirin causes some people to have bleeding problems and ulcers yet in other people have no troubles taking it at all, or how alcohol affects some people and in other's it isn't as effective, but the liver usually will show an increase in activity, hence the very common slightly elevated CPK levels in people with BFS!

Are you following me here? Seriously, I think this is finally a direction with valor and credibility.

It is possible that this mystery enzyme / substance is due to nutrition, or possibly an absorbtion problem or maybe a liver or kidney problem or maybe even a slight thyroid problem that the "spectrometors" aren't looking for or aren't programmed to find in our bloodwork at this point, so nothing out of the ordinary shows-up! Does this make any sense to you? It certainly does to me! I'm going to do some moire research on this. This is certainly more valid than the Herpes theory or even what we have been believing was a neurological problem all along. Its starting to make sense now :)
 
Here is an article from the MDA of America on enzymes and how they affect the muscles.

Simply Stated . . . Elevated Enzymes


Elevated enzymes are a frequently encountered problem in general medical practice, but their meaning often isn't so simple to discern. When they're found with a neuromuscular disease, the situation can get complicated.

What's an Enzyme?
There are thousands of enzymes in the cells in our bodies, where they act as catalysts for all the chemical reactions that take place in these cells. Without them, these reactions either wouldn't occur or would be too slow for the cells' needs.

Many enzymes are normally present in the blood and can be measured there. When cells are damaged by disease or injury, large amounts of these leak out, causing blood tests to show that enzymes are elevated above normal. (You can roughly compare this situation to a car that's leaking oil. Leaks in many parts of the engine can have the same result: oil all over your driveway.)

Where Did It Come From?

Measuring enzymes is only a clue to a possible diagnosis or problem, not a diagnosis in itself. An elevated enzyme level on a screening test should prompt a physician to look further into which areas of the body may be leaking enzymes into the blood, just as a good mechanic looks for the source of a car's oil leak. (In either case, finding the source is only the first step. The next steps are finding out why the leak has occurred and attempting to fix it.)

Two enzymes often measured on routine tests are known as ALT (alanine transaminase) and AST (aspartate transaminase). ALT is found in the liver, heart, muscles and kidneys. AST is in the liver, heart, muscles, kidneys, brain, pancreas, spleen and lungs. ALT is also known as SGPT (serum glutamic-pyruvic transaminase), and AST is also called SGOT (serum glutamic-oxaloacetic transaminase).

(A word from Alonzo - DON'T Freak out over this next paragraph. We do NOT have a dehibilitating disease or we certainly would be seeing some of us in wheelchairs, OK?)

In many neuromuscular disorders, muscle tissue is gradually damaged, either by an attack from the immune system (as in inflammatory myopathies), or by a genetic mutation inside the cells (as in the muscular dystrophies). When routine tests measuring ALT or AST are performed in people with neuromuscular disorders, these enzymes are often elevated in the blood, because the ALT and AST are leaking out of damaged muscles. But they can also leak out of other organs, particularly the liver.

Liver or Muscle?
If a neuromuscular disorder hasn't yet been diagnosed, a doctor may be misled into thinking that a damaged liver, not damaged muscles, is the source of the enzyme leak. In the general population, liver damage is more common than muscle damage, so this assumption isn't too surprising.

The careful physician will, however, investigate further. An enzyme called GGT or gamma-GT (gamma-glutamyltransferase, also gamma-glutamyltranspeptidase) is found in the liver but not in the muscles. If it's unclear whether the liver is damaged, a normal GGT level can help a doctor decide that it's not, while a high GGT level would sway him or her toward thinking it is. (That's far from the only test that can be done, but it's an easy and relatively inexpensive one.)

(Here's the CK and CPK part wich supports my new theory)

CK (creatine kinase), also called CPK (creatine phosphokinase), is only found in the heart, skeletal muscles and brain. The MM form of CK is the type found in skeletal muscles, and it can be specifically measured when a doctor suspects a muscle problem. A normal CK level with elevated ALT and AST enzymes would sway a doctor toward thinking there's a liver problem; a high CK with high ALT and AST levels suggests that something's going on in the muscle.

So, doing additional enzyme tests after a general screen can help a doctor decide whether the high ALT and AST are more likely the result of liver or muscle damage.

Of course, there could be a problem in both liver and muscle. (Your 1982 Volvo could be leaking oil from both the oil pan and a gasket.) Some metabolic muscle disorders, such as acid maltase deficiency and debrancher enzyme deficiency, affect both tissues. And two diseases can occur in the same person.

What Damages Liver?
A person at high risk for hepatitis or other liver damage, whether or not he or she has a neuromuscular disease, needs further attention focused on the liver, with the medical history and physical exam taken into account. Liver problems may occur in someone who's had blood transfusions before 1990 (before modern hepatitis virus testing), taken drugs (prescription, over-the-counter or recreational) that are known to damage the liver, recently eaten potentially contaminated shellfish, had a history of malignancy or recently been stabbed in the abdomen — whether there's a neuromuscular disease or not.

The medications riluzole, used to treat amyotrophic lateral sclerosis, and methotrexate, used to treat inflammatory myopathies and myasthenia gravis, are among the many drugs that have liver-damaging potential.

Most of the time, elevated ALT and AST levels in people with degenerating muscles don't mean much, other than that these enzymes, along with CK, are leaking out of the muscles. (The high levels of enzymes do no harm in and of themselves.) But sometimes, depending on results of other tests and the person's history, they can mean there's trouble in the liver or even in another organ. That's where medical detective work is needed.

See? It might just be some kind of enzyme that we are producing or releasing in our systems that is causing our muscles to twitch, tremor, cramp, feel weak at times and then, as the enzyme levels drop or get depleted, our symptoms change. This is consistent with our good days and bad days we all experience and also why some people show slightly higher CPK levels and other's don;t. The one's that didn't show abnormal levels didn';t have elevated levels at the time of the blood test.

This also explains why we see some people have a normal CPK level on one blood test and and a not so normal level on another test. This is because our bodies are using / producing different amounts of whatever this (possibly new and undiscovered) enzyme is continuously, which would make the levels constantly change as well.

Am I on to something here or way out in left field??
 
You may be on to something Aaron -- great piece of research. I do feel, however, that twitching caused by BFS should show up on EMG. In order to qualify for the study about BFS with the Mayo clinic, you had to show more fasics on EMG than normal.

RareAir
 
Yeah but what about all of the people that don't have their fasic's show up on an EMG? Don't they count as well? They have the same overall symptoms as the rest of the percentage of BFS'ers have, so shouldn't they be included in the BFS study too? Besides, only a percentage of people ever even get EMG's done, (I still haven't yet), so we don't really know (nor could the neuro's know) what the actual percentage (or protocol) for BFS really is unless everyone is included in the test.

Who's to say that only certain types of twitches show-up on an EMG, such as a muscle that fires on it's own, and back feeds signal into the nerve in which the EMG would see it? Is there a guarantee that this couldn't be the scenario? Think about it....

Voltage (which is what fires muscles and transmitts through nerves), can flow either way, not just one way. We don't have diodes built into our nervous system, so if a muscle fires on it's own and it is big enough to generate it's own electrical current, (like manually spinning a generator) it might produce current on its own, then it should show up on an EMG right? I tyhink that's how it works anyway, so stay with me here :)

However, if it doesn't "back feed" or even make any current, then it probably wouldn't show up at all. Follw me?

ALS twitches happen for an entirely different reason. Yes, ALS twitches are very fine and sometimes can only be seen under a black strobe light because they are so fine, BUT they are directly related to the nerve signals and electrical currents being cut-off, so obviously they show-up on an EMG.

When you hear more and more people come forward, with OBVIOUS BFS, and they have no fasic's show up on their EMG and they KNEW they were having them, then this might point to an entirely different direction than what an EMG looks for... which is "nerve conductivity", which is what BFS is looking more and more like it isn't... nerve related.
 
Alonzo, your theory sounds plausible to me. I appreciate your creative thinking on this. Here's my question. If BFS is caused by an imbalance of some enzyme, such as CPK, as you are hypothesizing, wouldn't that show up on a blood test? When I got all my medical workups for this, I had tons of blood work done, and I have all those reports. Is there a test for CPK levels, and are they done routinely? How would they show up on a blood test report? If you could figure out what kind of evidence would be relevant you could ask folks on the site to check their blood work and see if the results are consistent with your theory.
Annie
 
Well said Alonzo. As much as we'd all like to know why we twitch (if we know we'd have peace of mind about the twitches), the sad fact is that there are so many horrible diseases with no cure in sight and they need our best researchers and our dollars.

Sarah
 
Just something to think about though: Sometimes when they start looking for answers to one thing, they find answers to something else.
Who knows what BFS research could lead to!
~jen
 
You may be on to something. I commend your dedication to this irksome problem. Ever hear of something called muscle tetany? Essentially it is is twithcing due to lack of calcium and magnesium. Calcium deficiency and Magnesium deficiency are known to cause twitching. I wonder how many of you take in proper amounts of nutrients? Drink enough water? Stop and and smell the roses every now and then? Most people with twitches jump to the conclusion that they have some neurological disorder or ALS. The average person twitches, and it varies in intensity. This would mean that practically everyone twitches, and we would call it BFS if no atrophy or weakness is associated. I think you are on to something Alonzo. Keep it up. I am mainly here to say that if you dont have ALS, then your twitching isnt neurologically connected. Although i have a question, those twitches that didnt show up in the emg, were the visible on the skin? And if not could it be just paranoia?

-Kamal
 
I don't know near as much as you all (especially Alonzo) but I can tell you I can SEE large twitches and mine didn't show up on my first EMG about a year ago.
Since I am so freaked out and VERY twitchy I am having a second EMG on Aug. 6th. I am positive I will see twitches then so if the EMG doesn't pick it up I am moving on to the theory you mentioned that it might not be neurological at all. I will let you know.
I have thought often that this may have a dietary or nutritional cause, especially since my twitching got WAY worse after going on Atkins. Who knows?! I am also going to request the enzyme test you mentioned.
I sure hate stuff you cannot fix. I'll grill my neuro and see what he thinks. A friend of mine recommended seeing a doctor of Chiropractic because many of them are well aware of dietary deficiencies. Have any of you ever seen a Chiropractor? I ususally stray away, but if I don't get answers from the MD's, I am heading that way...
 
I hope no one minds but I found this very interesting old post from 2002 and wanted to bring it to the attention of those visiting the site now.
I for one know that my liver enzymes came back marked red but my GP said it wasnt of any concern (so why had the lab marked them as red!)
Just wondered others thoughts on Alonzos theory.
 
I'm bumping an old post from a couple of years ago, because I'm curious if Alonzo ever did any followups on it. Alonzo, if you do happen to read this, can you tell us if anything ever came from this line of research?If you're too lazy to read the whole thread, the basic argument is that BFS isn't a neurological condition at all, it could simply be enzyme based. That would explain why so many people have visible, obvious fascics, yet they don't register as fascics on an EMG.Alonzo, any updates for us?
 
Thanks for bumping this one Mario. I read this post a while back but dropped the idea (and forgot about it) after my basic blood tests showed nothing spectacularly off. At the time I thought - well, my diet hasn't changed so....but I was a newbie then. Reading up on metabolic myopathies, while confusing, made me realize how a body can go out of balance (enzyme/minerals/nutrients/vitamins/hormones) for various reasons and it is easy to imagine that there is a lot on this subject that medical science doesn't know. Now, after years of BCFS, I realize that I'm much more in agreement with this idea than before. I can no longer accept the 'nerve problem' cause after seeing the fluctuations in my symptoms and a consistent improvement with my diet. This fits into this idea of a enzyme/metabolic-related cause - why else would food and drink affect the symptoms? Why would eating a specific food or drink set them off within hours if it was neurological? It doesn't make sense as normal foods do not contain high enough amounts of any irritating substance to cause such a response. This also fits with the threads that have showed up here on alcohol and liver damage causing shakes, tremors, etc., (both anecdotal and in medical papers). I have tried to pursue this idea, but as noted on the post, if it doesn't fit into some well known myopathy or deficiency, then who would know where to look? So what to do? I'm staying on my good diet as long as it shows improvement in my symptoms & maybe find a decent nutritionist or dietitian with an open mind.Has anybody here tried a controlled, supervised, diet?
 
Fascinating, and something I had missed. I had no noticeable symptoms for a long time before I started a course of liver-stressing medicine four months ago. Seems like there's always something a little screwy with my labs, but "not enough to worry about." There is definitely a connection with me between exercise and twitching. Why do everyone's legs twitch? What are we carrying our bodies around all day on? My right arm twitches far more than my left. I use it a lot more since I am right-handed (especially mousing around at work).What is the connection between a chemically-mediated BFS and stress? Does stress increase things like cortisol levels? Of course. What can a lot of cortisol do? I don't know (besides supplying unsightly belly fat, according to TV commercials) but I bet it messes with a whole lot of things that could affect both nerves and muscles, as well as general well-being. And that's just one thing.With the needles being the gold standard for neuros, it would make sense that we would be given a clean bill of health and sent on our merry way. Once the GP learns it is not neurological, short of turning you into a lab rat and ordering research-type blood tests, what more is there to do? And what does a "normal" range mean, anyway, on these tests? Who's to say there aren't subtle reactions from some people toward either end of the spectrum?But why would we get "hot spots?" Sometimes they are in muscles that get extra exercise, but sometimes they don't seem to have any explanation. Why would a general problem like this manifest in odd body parts the way we experience things? Why would paresthesias that we would definitely connect with nerve issues be related to muscles, instead? Why does every article describe BFS as a "neurological" condition?Very interesting, but not many old-timers retain enthusiasm for "getting to the bottom of it" I bet. This is something you just live with, while taking as good care of yourself as you can. Still, it sounds plausible.
 
Interesting. I've said since this all began (to my wife) that I felt like my body was reacting to something. Why would my condition wax and wane so much? Something is clearly happening - an internal struggle in my body. How much sleep I get affects my condition so much. If I dont get enough sleep then I almost feel bruised. Is CPK Creatine Kinase?
 
HiI have liver problem ... benign (what is not benign in this world? ... :mad: ). In fact my Billirubin level is out of range for long. I may have Gilbert Syndrome (this mean that I'm not filtering well the waste ..).Just to say, many peoples with this DON'T have BFS AND i didn't had BFS, not even a SINGLE twitch (against what it is said that "every body get this from time to time ..) before the onset in 1993.I KNOW EXACTLY when this nightmare started SINCE i didn't had not even a SINGLE twitch ..- Day one my buttock start trembling during half an hour- Then one FULL month without nothing- Then one day it was in my arm for, say, 2 minutes- Then nothing for one full month- Then suddenly full body twitches and paresthesia.I did some study too, asking my mother some points.The fact (in my case)- My mother told me she HAD twitches 10 years ago (she is 85 now)- My mother is trembling on one side.What's going on? how is it possible to get the same things while we are 5000 km apart!In fact we should share a SMALL genetic defect transmitted by the X chromosome.Why the onset is so fast?My point of view is that it is known that we have markers on our cells, say A,B,C,D.Then a stupid virus hit us with marker A,E,F and recognized as foreign.Once killed, the system change A from MY to FOREIGN then attack myself (ourself?) creating all those symptoms.What is attacked? Not the nervous cell itself (else we would die) but may be some receptors on the nervous cell.EMG is OK most of the time.This means that the problem is in the brain.The fact that my mother is trembling AND i tremble it is known that it is Essential Tremor (ET).An this thing came along with BFS (twitches and others) and it is KNOWN that it is in the brain (Cerebellar). They can reduce symptoms now by putting electrodes in the brain.So i think that this problem is not an Enzyme but something in the nervous system.I would think that if it was an enzyme, we would have some other symptoms. I'm not tired for example that is most of the time, a marker of imbalance.---By the way my BFS, slow down with years then now it's back with vengance, it seems, with more paresthesia than twitches. I would think a stupid virus did the same things as in 1993 (i was a little bit sick) but i may have also PN now because of all those paresthesia.---By the way, you may have Essential Tremor (that is not BFS ...) at the same time. Every body i see that tremble should think about this. When you have that, then it looks like you are loosing you strength that is not ALS neither Parkingson. I had a bad experience lifting weights where my left side (that tremble) was a bit less stronger than right side. I'm still alive and my tremble decreased with time. You can tremble with head, jaw, legs, arm ...bye
 
Aaron: About your EMG statement, the reason why fasciculation in examined muscle doesnt have to be detected on EMG is that the needle is too far from fasciculation potential. The osciloscope (which EMG is) is nothing than simple "collector" and detector of electrical activity. So if the twitch occur in upper part of muscle and the needle is in the lower, EMG will be silent.Here I found from MDA (if you dont believe, altough this is nothing bad or good, just info):from A couple of questions: 1) I have at least a thousand fasciculations a day. How come during the 3 EMG's (2 partials, 1 full) no fasciculations were detected? Seems impossible.Actually it is not always surprising if the concept of EMG needle recording is understood. If the tip (or the recording pick up area) is far from fasciculating potential, then you do not see any fasciculations on the screen. For the second question, yes it is possible, and that is why a follow up EMG is usually needed.
 
Hi all~~ I hope everyone is doing well! I come on here from time to time to read the current posts, and hopefully help out sometimes. I still, even after 2 years, need reassurance myself sometimes also. I don't know if this is way too late, but I read over some of the posts in this topic, and I had to chime in with my experiences. I actually didn't have time to read it over very carefully yet, but I think I have the general idea. A while back, way before the twitching started, I had some blood work done, and my liver enzymes came out high. I had no idea at the time what this meant, but it was the start of about a year long nightmare for me. The doc subsequently sent me for a HepC test, and that came out positive. I couldn't understand this, since I really had NO risk factors at all, other than piercing my ears when I was young, which isn't a very common way to get it. From there, I went to a specialist, and after many tests and alot of time, it was determined that the first HepC test I took was a mistake, and I was actually negative. However, my liver enzymes were still high. I took a liver ultrasound, which should fatty infiltration of the liver. From there, it was determined that my elevated enzymes were due to 'fatty liver'. Since then, I've had blood work a couple of times, and my numbers seem to be more in the normal range. Nothing different about my life, no reason for that really. I've read alot about fatty liver, and it can be seen in thin people, it's just more or less a genetic thing. It also occurs in drinkers, but I don't drink much at all, maybe once or twice a year (if that) at a wedding or social occasion. My only clue is that I am overweight, and it can occur with that, but losing weight doesnt necessarily help the process. Anyway, I thought the connection between twitching and the liver enzymes is interesting, and I'll research more into this. I'm still twitching, nothings any better really, I'm just trying to ignore it and live with it. Life suddenly throws you something more important, and twitching takes the back burner. I've been having alot of tongue twitching again lately, which can drive you crazy. Anyway, I like to check in now and then, and say hi and see how everyone is doing. I hope all is well, and that maybe some of you who are newer on here might take some comfort in some of my old posts! I was such a spaz, and so many people on here reassured me and helped me so much, and I am forever grateful for this site!! Thanks, Val
 
I'm wondering. Could this really be neurological if so few of us have any actual neurological findings? What type of doctor should we be seeing? Most of us have normal (extensive) blood work, MRI's, EMG's, Nerve Conduction, etc. So really, what is this?Becky
 
On the issue of whether no abnormal findings on neurological exams means the problem is not neurological, my experience has been that the neurological tests can miss things or vary from place to place for whatever reason. My first EMG and NCV tests were totally normal. My second EMG and NCV tests were also totally normal. My third EMG and NCV test showed normal EMG and slow conduction of sensory nerves on the NCV test (this third set was done days after the second). The slow sensory nerves were noted on the report to be severe. My newest neuro says the numbers on those reports are not in the severe range just the mild to moderate range and he has no idea why they were labeled severe. Despite three clean EMGs, I had a muscle biopsy that showed nerve damage (denervation/reininervation). I still have no clincical weakness as verified by many clincal exams one as recently as a month or so ago. I had all 5 out of 5s on every muscle tested. I also notice no loss of strength doing my daily tasks. I have also had high ANA titres and blood and urine tests showing monoclonal gammopathies that are connected to neurological problems. The follow up tests on all of these were normal. So depending on when I was tested, I may or may not have showed a problem. I also have hypertrophic nerves in my feet that are palpable. This is clear evidence of demyelination and remyelination. The first THREE neuros I saw never looked for or noticed them. The bottom line here is that our symptoms rarely get thoroughly investigated because we seem normal and if we don't have severe discomfort we don't push for more investigation and probably rightly so unless we just want to help advance medical science. I pushed for more and still do because I have severe discomfort and would rather take meds or treatment to address the cause and not just the symptoms. This pushing has showed me that the testing is not black and white. Either things change quickly or things come and go or things are hard to detect, who knows? I just know this isn't a simply process.
 

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