More support of non neurological cause for BFS

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More support of non neurological cause for BFS

Postby Arron on June 16th, 2003, 1:03 pm

Just some facts that we know; So far there is hard evidence that some medications make twitches go crazy, like Paxil and other natural substances your body naturally makes, (such as cortizone), but there is no hard evidence of meds or vitamins or anything for that matter that makes twitches go away, other than the power of suggestion or the placebo effect.

Yes, there are the few people that try B-12, Potassium, Calcium and even yoga and exercise and say it made their twitches less, BUT, it is every bit as common to have these same people come back, posting that their twitches have come back again, or the many people that say exercising makes their twitches much worse and even cause pain and discomfort, than people saying it helps. So with that, as of yet there is no "hard" evidence pointing to a simple remedy that works for the majority of people with BFS.

If this were a neurological cause, you'd see neuro's with answers one way ior the other, but so far, the only answer we can get is that it is benign and that it isn't a disease such as ALS.

You can't fix the brain with meds, yet some meds make twitches and symptoms much worse. Thuis again points in the diorection of my theory that BFS is a chemical imbalance somewhere in the body, be it hormones, chemicals or enzymes. That I don't know yet.

We have to look at what we know, and collectively, we know quite a bit. We know that not one neuro has any rational answer as to what causes BFS or how to treat it. All they know is what it isn't.. ALS or any other NMD.

We know what the symptoms are and what makes them worse, exwercise, lack of sleep, stimulants, over exertion and certain medications.

We know it's benign and that NO one has gone onto to develop ANY NMD from BFS or become incapacitated in any way.

We know we have stress and anxiety, and what happens when we have these conditions? Your body releases chemicals and enzymes into the blood stream. And like I said in another post. If stress and anxiety was the sole cause for BFS, then people who have their child kidnapped or killed or severaly injured would certainly come down with BFS as would almost all new soldiers out the first time at war, experiencing "incoming".

There is pretty much no one on this board that has described anxiety or stress levels as high as either of those two causes, and believe me, you can't compare either of those two causes to your daily life stress or hard day at work or bad school year or whatever. There's NO comparison. So that kind of kills the stress and anxiety theory, besides, for every person that says they had stress and anxiety in their life before BFS started, there is an equal amount of people saying their life was going great before their twitches started, so again, no "hard" evidence pointing to a cause.

We know that most of us BFS'ers have elevated liver enzymes when we get our blood work back. It is usually blown-off as nothing, or we are told to "lay off the booze for a while". Yet no one has really looked into this liver common denominator.

I'm not saying it's a liver problem at all, after all, the liver itself is merely just a filter. It's what the filter is catching that is interesting. Like finding rust in your car's fuel filter. You obviously wouldn't blame the fuel filter for causing the rust. You'd inspect the gas tank and steel fuel lines for the cause of the rust, not the filter iteslf.

We know that the Thyroid will cause chemicals to be released in our bodies that WILL cause muscle jerks, spasms, twitches, weak feelings, fatigue, shakes and tremors and just about every other BFS symptom out there, yet most of us have perfect Thyroid tests. There are also chemicals that are man made that do this very same thing, sich as prednisone, caffeine, again, pointing to a chemical, enzyme or hormonal cause rather than a neurological cause that has been beaten into the ground with not one single hard answer, or even an answer with merit so far is just running us in circles and getting us no where.

So what does this say? Well, if chemicals (be them natural or man made)will cause muscle twitches, cramps, fatigue, weak or drained feelings, shakes and tremors and so on, and most of us have some type of elevated liver function, and not a single neuro has an answer that has any hard merit as to what causes BFS, don't we think we should be looking in the direction of what our liver's are trying to tell us? I think it does.

It seems to me, that brain disorders pretty much progress as time goes on. BFS on the other hand comes and goes and never really gets any worse than what everyone describes, which is what we all pretty much go through. We have good days and bad days, and periods where it seems to go away, then comes back again with vengence. That seems more like a chemical disorder the more you look at it than any neurological disorder to me. I mean, anxiety is a chemical imbalance as is depression, and with those you have your tense moments and good moments, just like we have with BFS.

I could go on and on about this, and there are so many comparisons to make between chemical imbalances and strange muscle things going-on, that I could write a book on, but not one "hard" thing to write about comparing neurology and BFS. So rather than keep saying what we know it isn't, I think we should start looking in areas we haven't looked yet.

Stress, anxiety, neurology and so on should be areas of the past now and new horizons and ideas should be looked at under a much larger magnafying glass.
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Postby sarah on June 16th, 2003, 1:32 pm

Arron,
Interesting ideas you brought up. Can you tell me about the abnormal liver tests? Didn't know that several people on this forum have had that. I thinktheir is a stong stress/anxiety connection to BFS. I agree that having you child murdered, and other horrible things are the worst stress possible and these folks don't develop BFS. But, that said, long term chronic stress from depression and/or anxiety (the two often go hand in hand) could have an impact on BFS - or maybe it's the medications we take to control the anxiety? Anyway, it's interesting that you approach this from a chemical problem rather than a neuro problem. Makes sense to me. I have lots of chemical things going on - anxiety/depression, thyroid problems, female hormone problems. No wonder I'm twitching!
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Postby reneeintx on June 16th, 2003, 5:14 pm

Sarah~

I'm right behind you in line on all those things. Female problems, thyroid, stress/anxiety.

I had an ovarian cyst and had to be put back on birth control @39.

I never planned on having anymore children, my husband is "snipped". The doctor says I need to take birth control to keep the cysts from forming.

I'm on synthroid for hyperthyroidism, and recently quit prozac after 9 years(too many) The neuro said I shouldn't have been on it that long. He also said quite a few of his patients that have BFS were on SSRI's a few years. Who knows what these med's due to us over time.

Renee :)
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Postby Brian_B on June 17th, 2003, 1:23 am

klonopin or neurontin really help to reduce the twitchs a litte bit. since they are drugs that work in you brain, it would be a neurological cause(cause of BFS)
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Postby Arron on June 17th, 2003, 11:21 am

alcohol helps reduce twitches as well, so does any sedative, but that doesn't mean in any way that it is neurological or that any one of those is a cure or a remedy. It simply means that when you are relaxed and calmed-down, you tend to not focus on the twitches, which makes them seem to be less frequent. Just like SO many people have posted that when they don't think about the twitches, they seem to go away.

Perception is everything! Xanax, Klonopin, Ativan, Valium, etc. have no evidence that they stop or slow the twitches down, what so ever. It is all perception and the fact that when you are calmed down (from the effect of the medications) you don't dwell on the twiches as much, therefore, they "seem" to go away. This has been talked about many times before and there are LOTS of people on any number of those meds that still twitch 24/7 on a regular basis.

Ever hear about guy's being shot or bombed in war and they never even noticed that their legs was half blown-off until someone pointed it out to them? We've all probably heard stories like that and I personally know of a guy that went through that. So does it mean that because he didn't feel the massive wound, it wasn't actually there? Again, Perception and the power of removing your mind from one area and concentrating on another. Twitches do not "go away" with Klonopin or Xanax... if it were that simple, don;t you think everyone on here taking those meds would be recommending them because their twitches went away or became less frequent? It also has to do with the placebo effect... which we see very often when people have their hopes-up that vitamin B-12 or other natural remedies suddenly made their twitches go away, yet you ALWAYS find these same people posting again, that theirt twitches are back 24/7.
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Non-Neuro cause of BFS

Postby jcavan4125 on June 17th, 2003, 5:20 pm

You make some interesting points Arron, but it still does not rule out a neurological cause or at least neurological involvement in BFS.
It is often the case that symptoms do not directly correlate with the cause of a problem.
For example, it does not logically follow that the painful rash of shingles is of neurologic origin, but it is the chicken pox virus that we all had as kids that lives within our nerve roots and presents itself later in life (often in times of stress) as shingles.
One would not assume that the pain they are having in their right shoulder blade could be due their gallbladder (which is located in the right upper quadrant of the abdomen), but that is exactly how gallbladder disease sometimes presents. It is called "refered pain " and is due to the fact that the nerves that signal pain in the internal organs are not as "precise" as though that control the more exterior organs such as muscles, skin or bones.
The same reasoning applies to the fact that appendicitis will often begin as pain just below the breastbone, but eventually (often times over several hours) localizes to the location of the appendix in the lower right quadrant of the abdomen.
The point I'm trying to make is that because we don't know the cause of BFS we are basing alot of our theories of the origin on symptoms and what a particular medication does or doesn't do; this puts us at great risk for being totally wrong!
For decades we thought ulcers were caused by stress and we went thru a multitude of different treatment protocols before we discovered that ulcers were caused by a bacteria. Once we found the cause the treatment was made far more effective by adding antibiotics to combat the offending agent (H. pylori bacteria).
I'm not trying to knock you for postulating theories, God knows we would all like to know what the cause of BFS is and how best to treat it.
I'm only saying that we need to be careful not to jump from A to Z without carefully considering all of the possibilities and not be too quick to rule out something without good evidence for doing so. Medicine sometimes advances by accidents, but more often by careful consideration of all possibilites and a ruling out process until the answer is certain.
Just my opinon!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Arron on June 18th, 2003, 11:54 am

Jcavan4125, you said, "For decades we thought ulcers were caused by stress and we went thru a multitude of different treatment protocols before we discovered that ulcers were caused by a bacteria."

That is exactly my point! I didn't say BFS IS a chemical thing, I said it is "pointing" towards something other than a neurological condition and I am in "support" of this THEORY. Which is all it is at this point, theory, not fact.

Just like your ulcer analogy. If no one ever said anything or posed new questions, we'd still be treating ulcer's as a stress thing and staying away from spicy foods, which has nothing to do with ulcers at all.

Obviously (much like ulcers) the neurological community has come up with exactly ZERO answers as to what causes BFS or what it even is for that matter, so it would make sense (to me anyway) to look elsewhere, right? And, by looking elsewhere, we have found a few common denominators, such as elevated liver enzymes in most BFS'ers among other things.

So what I am posing isn't fact at all, it is my theory for right now, which I might change as facts point away from it and then I'll move-on to something else until I find something.

I am simply saying that so far, not one neurologist has come up with one viable answer, so I am posing theories in other places, much like the gall bladder and the pain in the shoulder blade symptom. If no one corralated that people with this strange shoulder blade pain also developed a gall attack, then no one would have put the two together.

As the title of this thread says, "More SUPPORT of a non neurological cause", NOT "It isn't a neurological cause"... I've said nothing to indicate what I said was fact, it is simply posing a new idea. Anyone else have any new ideas? I don't see too many bewing posed other than the old, beaten into the ground, "it's stress caused", "it's anxiety caused", "it's a herpes virus run amuck", and so on... all of which have been run into the ground and still not one solid answer, so it makes sense to pose new theories and ideas... I would think anyway, unless you just want to go on believing what it "could be", then be my guest... Personally, I want to KNOW, so I pose new ideas and do research in those areas until I find answers. It sure sucks being scolded for posing new ideas and looking in new areas that "could" be of interest... have any you want to share?
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Postby alive on June 18th, 2003, 2:08 pm

I'm desperately trying to figure this out too!

I'm positive BFS is not the result of stress or anxiety (though it's definitely aggravated by both). Personally,I had the first sinus infection of my life just before this crap started... thus I'm definitely for the virus explanation!(In addition I haven't been nervous BEFORE the symptoms, but I'm a nervous wreck after three days of fasics in exactly the same spot - and after continuously testing those muscles for their strength...)

Something's wrong with my system -I tremble, feel weird and have fasiculations ALL OVER, EVERY DAY! I have hot spots, too. A 10-day one on my palm and a persistent one on my left knee. It's so annoying and also so scary... BUT I couldn't have ALS - I'm as strong as ever! (Even if I had ALS - with this speed of symptoms evolving I'll be 80 years anyway before I die - so who cares?!)

I went on a low carbohydrate diet (Atkins) before this crap started, for about 6 months. With all of the false information around of the dangers of low-carb diets it was more than easy to believe the fasics were a result of the diet. Well - I lost 30 pounds of a total of 40 (but have since gained 10 :( ) because I stopped -in order to make the fasics go away... They haven't - I only weigh more AND have fasics. (The really funny thing is I avoided caffeine and ate a lot of supplements - esp. magnesium and vitamin B during the diet...)

Personally I feel (I have absolutely NO scientific evidence to back this) that BFS is some sort of a benign form of ALS, just as there are benign tumors. BFS never develops into ANYTHING, except strange feelings in the body (especially in the muscles, throat). Something in the body is not functioning as it should, but the "disease" doesn't cause any damage either.So the only thing to do is to accept it.

And *beep* it - I'm GOING TO ACCEPT IT! There are so many horrible destinies in life - if my share is to live with fasics and a weird throat feeling - then be it! I'd choose this crap anyday instead of getting a really life-threatening disease!

After 3 months of fasics I'm also sure they have NOTHING to do with ALS. My muscles are strnger than ever - they hop and jump and pounce all over the place! A dying muscle could never do that!

ARRON - in one of your general posts you said it's good they're not researching this condition and that they're spending all of their funds on ALS-related research in stead. I couldn't agree more! BUT- I think that if (during my lifetime = at least 60 years to go, I'm 35 now :D )they find a cure for ALS, they will also find what's causing BFS.
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Postby jcavan4125 on June 18th, 2003, 4:24 pm

Believe me Arron I am not in any way trying to scold you for presenting new ideas. I am in total agreement with you that it is a good thing for us to explore all possibilities. I just felt that from your posts you were trying to say that because neurologists didn't have any hard evidence that BFS was of neurologic origin, then it wasn't of neurologic origin. If I miconstrued what you were saying I'm sorry.

My point was that we should not rule out any possibilities until we have evidence to do so.

That being said I agree with you that the answer lies ultimately with some substance exerting its influence on the muscles or nerves (and on the body as a whole for that matter). That may be chemical, infectious, autoimmune, hormonal or some combination/interaction of all the above.

What do we know so far...

There is a high percentage of healthcare workers affected with BFS (these are people that are exposed to countless patogens on a daily basis).

There is also a high percentage of people who had onset of BFS symptoms shortly after a viral illness.

This certainly points to an infectious agent as the initating cause. Who knows it may take exposure to or co-infection with more than one agent to initate the process.

Beyond this is anyone's guess as to what happens next, chemical, hormonal, autoimmune...

The symptoms themselves (the twitching) however, seem to involve the nerves and muscles in some fashion at least as the target organs.

The ultimate process may in fact be multifactorial-


infectious agent-> autoimmune/chemical/hormonal response-> symptoms

Obviously, once we know the process, we can then determine where to apply the cure.

I look forward to your continued ideas and hope that I can add to them without sounding like I'm trying to punish original thoughts, I'm not!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Arron on June 18th, 2003, 5:39 pm

Jcavan4125 and alive, both great posts. The answer is out there somewhere and it may be a lot more complex than what we first thought. Maybe it IS some form of benign ALS, I mean, why not? As Alive put it so well, there are LOTS of forms of other benign conditions that mimick much worse conditions, such as tumors that aren't cancerous, and tremors for two quick examples. I mean, just because you have a tremor doesn't mean you have Parkinson's or anything, right?

Viral infection? Maybe, but something just keeps my mind looking elsewhere. I mean at any given moment, we are ALL fighting off some kind of bacteria and countless forms of viruses with every breath we take, every nostril we stick a finger in and every eye we rub.

Some our bodies simply fight off and we never even show a symptom while others ravage the entire body at short notice. My point with the virus thing is we all seem to have sinus infections, colds, flu's, post nasil drip, headaches, muscle aches, alergies and so on pretty much on an ongoing basis and it is normal for people to have these ailments depending on their enviroments.

I mean, teachers get sick constantly from kids spreading germs constantly. Nurses and doctors always seem to be sick because they are exposed to so many people with viruses and bacterial infections. Mold, mildew, high pollen areas, dust, dander and so on can contribute to so many ailments (sinus infections, alergies, athsma, etc.) so it just seems too obvious that some of the people with BFS had some kind of infection going-on before their onset. But remember, many other's report being in perfect healt with no anxiety and still coming down with BFS... and that is why I kind of discount that theory for now.. I said "for now"... not premanently.

Because the thyroid and many other chemical based substances, (hormones, adrenaline, caffeine, vitamin D and so many other's) can cause trembling, twitches, cramps, drained feelings, fatigue and countles other symptoms that appear to be muscular or in the nervous system in origin, I just thought it might be a good place to start looking being that out of years of research and seeing patients, not one neuro has an idea as to what BFS is, or what causes it, AND most people do show some types of elevated liver enzymes. Maybe that too is as common as the body just shaking-off bacterial and viral infections.. I dunno... but it seems like a good place to start anyway.
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Postby kim on June 21st, 2003, 10:07 am

Hi all! I just read through your posts, and it's always great to keep these "debates" or lines of communication going! It is the only way we will ever find out why or how we got here.

I have a few personal "opinions" I'd like to share regarding causes of BFS.

With regard to throwing the "anxiety theory" out the window, I have to disagree. I think anxiety and stress is different for everyone. I also believe that sever anxiety can be caused by a "Chemical Imbalance". Some have it, others don't. That's why some people react differently in different situations. If my child were kidnapped, or if I were in combat, I would become a twitching basket case! I have thyroid problems, and my liver blood work came up screwy! My friend on the other hand, who has no medical problems to speak of, has NEVER experienced anxiety or panic. Even when her sister was dying, she kept it together, and never began twitching. She often tells me she can't comprehend panic attacks, or how stress can debilitate a person. While it seems everyone in my family can relate. They all have experienced it in one way or the other. It seems we are wired differently than other families, or that our chemical make-up is different.

Since I have been on anti-depressants, and a small amount of xanax each night, and therapy, I am not twitching any more than the average person. I also don't worry about it anymore, and it seems my chemicals are balanced. I am also on armour for thyroid, nothing for the liver since I (and my Dr.) don't consider this much of a problem at this time.

So, is it anxiety? Is it chemical? Is it neuroligical? It all seems to go hand-in-hand! (For just us few with a chemical imbalance or two!)

Thanks for posting! Thanks for listening!

Kim
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Postby Arron on June 23rd, 2003, 2:36 pm

Kim, you are pretty much right and you kind of supported the chemical theory even though you didn't really say so.

What heppens when we have stress or anxiety? Chemicals get released into the blood stream, such as Adrenalyne. Some people's adrenal glands, or systems that trigger the adrenal gland, work with less effort while other's hardly get set-off at all. Hence why some people seem to fear nothing and other's are afraid of everything. Adrenalyne IS a chemical and is not a neurological thing, which is exactly my point. Stress and anxiety are factors but not THE cause.

I was on a medication when I was younger called Coreguard. It slowed my heart beat way down and shut-off my adrenal gland. I was fearless! I would do things on my race bikes that I would have NEVER done before that medication and not even break a sweat! I also felt real calm and content with life. Again, a chemical thing, just like depression, anxiety and so on is thought to be. That's all I am saying.

All kinds of people have severe fears, but only a hand full of us (comparatively) twitch, and that is the mystery. And it's still is a mystery. If no one brings-up new ideas, we will prepetually be calling it a brain disorder or an anxiety thing and running around the same circle, over and over again - getting nowhere, just like what someone pointed out about ulcer's, which for decades were thought to be caused by stress and stomach acids, when in fact all it takes are some antibiotics to cure the problem becuase it is bacteria that is the actual cause.

Thank god someone posed a new question and finally looked farther than the stomach alone or there would be no cure for ulcers. I really think BFS is in this same ball game. We are looking at the twitches and thinking it is muscular or neurological in origin, when the real answer is "probably" some where else, being that SO many neuro's and muscle experts are at whits-end...
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Postby Floater on June 23rd, 2003, 7:48 pm

all i know is my liver was fine before bfs,,,,now its all messed up it seems for no reason my enzymes decided to elevate...i wasnt drinking...just taking meds..klonopin for twitching. my doctor cant understand why they went from normal to moderatly elevated in a couple of months...if they didnt go down i would of ended up having a liver biopsy over all this..so i do believe there is a liver connection to this,,,come to think of it..

thats all
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Postby Arron on June 23rd, 2003, 10:04 pm

Yeah, I had elevated liver enzymes too... and I didn't really drink THAT much :shock: A lot of BFS'ers have elevated liver enzymes when on their last blood test (before twitches) their liver was well within the normal range. Again, I am just suggesting something new and looking beyond what "appears" to be the obvious.

Ever have your car not start or simply quit running and someone finally says, "does it have gas in it", and you were SO hell bent on it being something else, you overlooked that you were simply out of gas? I have heard about people doing this every once in a while, and that is my very point. Maybe we are looking at things so hard, we are actually putting blinders on ourselves and not seeing the "big picture". There are certainly other "signs" that point away from this being a brain or muscular disorder... and even though I always dismiss stress and anxiety as the "cause" of BFS, maybe it IS a chemical induced reaction FROM the stress and/or anxiety, such as a by product of adrenalyne or something... who knows?
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Postby Kamal04 on July 19th, 2003, 11:01 am

Any kind of research going on for BFS? And is any one on this site a doctor or medical researcher? Just wondering. 8)
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