POSSIBLE NEW FINDING ON BFS!!!

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POSSIBLE NEW FINDING ON BFS!!!

Postby Arron on March 27th, 2003, 1:04 pm

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?? :shock:

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 :-)
Last edited by Arron on March 27th, 2003, 3:51 pm, edited 1 time in total.
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Postby Arron on March 27th, 2003, 1:40 pm

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 Arron - 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??
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Postby DogBone on March 27th, 2003, 6:48 pm

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.

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Postby Arron on March 27th, 2003, 9:00 pm

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.
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Postby Annie on March 31st, 2003, 12:59 am

Arron, 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.
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Postby Arron on June 11th, 2003, 2:12 am

Hi Annie, what I was getting at mainly is that BFS might not be a neurological disorder at all, which would back-up why no neuro's have any real, hard answers one way or the other, except that it is benign.

I was thinking it "may" be some type of unrecognized enzyme or substance not yet discovered or screened for. Much like when someone is poisoned by certain chemicals, they don;t show up in an autopsy because the blood "spectrometer" isn;t programmed to "look" for such substances.

My theory was that if there is a substance that CBC's and Panel 7 blood tests just don't screen for, it doesn't mean the substance (enzyme, acid or whatever in our systems) isn't actually there. It vwery well may be a substance and we just don;t know what it is to screen for it yet. That was my theory. So far there hasn't been a neuro yet that has said what BFS IS. We've heard everything it isn't though... so maybe they are barking up the wrong tree...
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Postby Rich Longer on June 12th, 2003, 3:32 pm

This sounds very plausible to me. After all we know thyroid hormones can cause twitching. So why not other substances.

My neurologist was totally honest and told me that BFS is poorly understood. the problem is we all end up at a neurologist because they want to check its not a neurological condition. I am not sure that the average neurologist thinks much beyond brain muscle and nerves -so they probably wouldn't consider this

Lets hope someone does find out what the cause is and hopefully a cure.
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Postby Arron on June 13th, 2003, 12:12 am

That's exactly my point Rich, it doesn't take a neurological malfunction to cause twitching, fatigue, muscle aches or anything like that.

Not enough Vitamin D will cause muscle shakes when under exhertion. I just saw a segment on Discovery Channel on that one and it was quite eye opening. Thyroid levels being too high or too low will cause twitching and all sorts of other things. Too much caffeine or other barbituates will cause the shakes and tremors and jerky motions. Too much natural hydrocortizone or too little can cause muscle cramping, twitches, fatigue, shakiness and so on. Just take Prednisone for a while, and you find that one out!

The bottom line is NONE of these things are neurological in origin, yet they ALL cause muscle disturbances, twitches, shakiness, fatigue and so on. What you just said about thyroid horomones causing disturbances, so why couldn't other natural chemicals do it as well is exactly my point, and just because it is 2003, doesn't mean the medical community knows every thing or has discovered every chemical substance yet either.

What they are looking for might not even be detectable yet. After all, you have to discover something, study it and program all of the test equipment to LOOK for it BEFORE you can test for it in your body. I just think the neurological community is barking up the wrong tree, and being that this is benign, they aren't spending any time on it to find a cure, which I totaly agree with.

As long as there is ALS. MS, MG, Dystonia and SOOOO many other things that are MUCH worse than a BENIGN condition like BFS, then there is no reason why they should dedicate time and money to this particular cause. I know I'd be upset if I knew they shifted directions and started devoting precious time and energy in finding a cure for this benign condition when there isn't even a treatment yet (that works anyway) for ALS and the other "nasties" out there.

We can live with BFS, you can't live with ALS, so let the research continue where it needs to be, is what I say.
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Postby sarah on June 13th, 2003, 3:54 pm

Well said Arron. 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.

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Postby Jenn311 on June 13th, 2003, 4:12 pm

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!
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Postby sheilainsa on July 6th, 2003, 10:39 am

Hi

I'm new around here, but have been twitching, tremoring, jerking etc for about 9 months now, though the first thumper twitch was 5 years ago (I had a long break till October last year). I read Aaron's post a few days ago and the more I think about it the more I think you may be on the right track in that BFS is NOT a neurological condition. We've almost all been to neuros and been checked out thoroughly and they find nothing so call it benign FS. I agree it may be benign but something sure as hell is causing it. If it was thyroid then I'd be on pills by now to fix it. I think its something along similar lines and just because the doctors don't know and don't seem inclined to find out, then we'll just have to keep on twitching.

My pet theories were too much wine and Nytol, dehydration or disc problems, as I can't really relate mine to anxiety, being the laid-back kind of person I am. I was in the middle of exams (very mature student!) when I started to get the persistent twitches, but I've been studying for years now and its basically a hobby and I don't worry too much about it. It kind of annoyed me when the doctors suggested anxiety when the only thing that was making me anxious was wondering why I was having such freaky symptoms.

Great site - thanks for all the info.
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Postby Kamal04 on July 21st, 2003, 7:10 pm

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 Arron. 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?

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Postby twitchaholic on July 21st, 2003, 9:56 pm

I don't know near as much as you all (especially Arron) 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...
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Liver related

Postby Greata on September 26th, 2003, 10:03 am

Aaron,

It has been 6 months since your posting on the possibility that the twitching is not neurological bui may have something to do with liver enzymes and/or elevated counts of sorts.. Have you found out anything more? I am very interested, as during my EMG, he could not see any fascic.. He had needles in both calves, my tibial muscle and arms, still nothing. Yet I felt them. I eat a lot of carbs and wonder if this along with dessert and wine at night are causing {or at least perpetuating} this problem.

Any info I can take to my doctor, like what tests to ask for etc would be so helpful.

Thanks,

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Postby Maisy on February 27th, 2007, 11:16 am

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 Arrons theory.
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