POSSIBLE NEW FINDING ON BFS!!!

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Postby puggriffey on February 27th, 2007, 8:56 pm

I believe this was one of the best posts I had ever read on here, and am glad to see it resurfaced for "newbies". I am not necessarily convinced that the theory is "right" (who knows), but I AM very much aware now that twitching and other "neurological" symptoms we experience are not necessarily triggered or exacerbated by any cause neurological at all. The body is very diverse and complex.

I do know many of us suddenly had elevated liver enzymes pop up at, around or during the appearance of BFS. Mine have fluctuated often. I stopped wondering and searching for "answers" long ago, and Aaron's theory makes as much sense as any. What I do know is solid acceptance of what this is, and ISN'T, has been worth its weight in GOLD for me as a "cure". There is less nasty stuff, with shorter duration, now than ever before. That is what makes me tick now. Life is good again, and it was very dark for a long time.

Thanks for resurfacing this. Recognizing "neurological" symptoms don't by any standard mean a neurological problem was extremely big in helping me build the mental foundation for moving on.

JG
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Postby zekebcfs on February 27th, 2007, 11:21 pm

I agree with Arron 100%. BCFS/BFS has little to do with nerves in my opinion. Three neuros now. Can't find anything wrong! That is why I am moving on to a RA to imvestigate further. Besdies having BCFS does not limit you from having anything else wrong. On the other hand BCFS does not sem to behave like other auto-immune diseases simply because one of the rules of thumb has been the ration of men:women affected. BFS appears to target men more than women. Men have more muscle, men are more affected with BCFS...can there be a link? This is not to say men are immune from auto-immune issues. As some have pointed out before many on this board seem to be more inclined to physcial activity than the general popullation. I don't claim to know what BCFS is but I can read the vasts posts that confirm that neuroloical tests for the most part are useless at resolving our questions. Thank God it is not fatal just crapy to have to live with this BCFS! Since this disease is poorly understood the symptoms can be all over the place and most of us will do the Specialist-specialist -specialist merry go round!
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby MarioMangler on March 2nd, 2009, 5:55 pm

I'm bumping an old post from a couple of years ago, because I'm curious if Arron ever did any followups on it. Arron, 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.

Arron, any updates for us?
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1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
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5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby ImOK on March 2nd, 2009, 7:25 pm

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?
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby Mendota on March 3rd, 2009, 12:09 am

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.
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby spelbound on March 3rd, 2009, 6:19 am

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?
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby pinprick on March 3rd, 2009, 12:17 pm

Hi

I have liver problem ... benign (what is not benign in this world? ... :twisted: ). 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
Idiopathic SFN (head to toes) ... auto-immune related
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby Blizna on March 3rd, 2009, 12:33 pm

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 http://www.teleemg.com/new/als1.htm

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.
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby valger59 on March 31st, 2009, 4:59 pm

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
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby twin2 on April 1st, 2009, 7:11 am

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?

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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby Angst1986 on April 2nd, 2009, 1:58 am

twin2 wrote: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


Interesting question. I think BFS is seen as a neurological issue because most of us go to the neuro because of our twitches, and the neurological exam is the first thing to do in order to exclude REAL neurological issues that might me associated with twitching. There are also suggestions that BFS is actually a muscular issue, not necessarily a neurological one, so it could also make sense to let a specialist on muscle problems have a look at our BFS.

If nothing else helps and you really want to get rid of that BFS (for example because it's not just twitching but also annoying cramping and burning), you might try Alternative Medicine. I don't really believe in that stuff, but traditional medicine seems to fail in the case of BFS. The probability that Alternative Medicine will help is extremely low, but it's worth a try if you have time and money (here in Germany, most health insurances don't pay for Alternative Medicine treatment). The methods inculde from administration of herbal drugs, meditation, weird sorts of "energy therapy" and even something like spiritual healing. Some of those specialists even have devices that measure your biological aura (looks like a sort of halo around the body) and can make assumptions of what is wrong with you depending on the color of that aura, and some even claim to be able to influence that aura.
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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby jro on April 2nd, 2009, 9:12 am

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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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby LIndaJ on April 2nd, 2009, 11:04 pm

But, I think there are many of us here, me included, who have normal CK levels and normal liver enzymes.

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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby LIndaJ on April 2nd, 2009, 11:04 pm

But, I think there are many of us here, me included, who have normal CK levels and normal liver enzymes.

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Re: POSSIBLE NEW FINDING ON BFS!!!

Postby Slavin Balen on April 5th, 2009, 9:25 am

I always have normal CK and liver enzymes. I have had a ton of blood exam in 2004 and 2005 during my anxiety period of life thanks to fear of ALS. Nothing was wrong. Every exam was under statistical margin due to my age.
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Re: POSSIBLE NEW FINDING ON BFS!!!

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