CPK Levels in BCFS: Clarification?

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owingDuckWhistler777

Well-known member
Alonzo,

You mentioned in your excellent "in a nutshell" post that CPK levels can be raised in BCFS. I was quite please to read this as mine are 20% above normal, BUT any neurology textbooks I have looked up BFS or BCFS in say that CPK levels are normal. Could you let me know what your source was?

Also - is anyone able to hazard a guess as to how common BFS is compared to ALS/MND?
 
there are no real stat's on the distribution of Bfs in the general population. it seems that in most cases neurologists see as many als patients as they do see bfs sufferers. keep in mind that all als patients will and up in the doctors office while probably the majority of twitchers do not bother.I would not worrie about your cpk level.
 
dwl,

I too, have slightly increased CPK level (275) and this freaked me out quite a bit because, as you said, this is usually not the case in "textbook BFS".
Furthermore I'm very concerned about the fact that at neuromuscular information pages "slightly elevated CPK" is often mentioned as a common finding in ALS patients. (emphasis is on "slightly" increased, whereas normal or very markedly increased levels (above 1000) point away from ALS)

However, as I have learned from further research and many reassuring answers at the MGH-forum CPK is a very inspecific indicator of muscle cell damage that can be increased for many other reasons.
So, although it is true that elevated CPK is found in ALS this DOES NOT MEAN that the reverse conclusion also holds.
For example, CPK will be slightly elevated after physical exercise or
any kind of muscle injury.

How high was your CPK level ? (mine was 275, with 200 as the
upper limit of normal range)
What was your docs comment about it ?
Mine seemed not impressed and just asked if I did exercise the day before the blood test (which indeed was the case)

You can read many reassuring/interesting facts about elevated CPK
in the following thread at the MGH-forum:


As for the relative frequency of BFS compared to ALS:
This is *EXACTLY* the very one question that I've been trying to get the answer to for the last 7 months.

For if we knew this number then we
could easily derive the probability of one having ALS when the only
observed symptom is body wide fasciculations.
For example if BFS was, say, 100 times more commen than the
twitching-only-onset form of ALS (about 7 to 10 percent of all ALS cases) then the probability of a twitcher having ALS instead of BFS would
be only 1 Percent.
Unfortunately there is very little information avaiable about the incidence of BFS.
From my own research I did a very rough estimate of the upper bound
of BFS incidence at roughly 1 of 100 people (although I suspect that
the actual incidence for the very profouse body-wide twitching would
be lower)

Anyone any further factual informtaion about this issue ?
 
My CPK level was very similar, around 240. I phoned a biochemist who confirmed that cramps and exercise can commonly cause slight elevations. I haven't had it re-checked yet.

I spoke to the neurophysiologist who did my EMG 6 weeks ago & asked him what his impression was of the rate of benign fasciculation to ALS and he said that benign fasciculation was "massively" more common and he only sees the tip of the iceberg. He actually keeps a copy of the clinical paper which demonstrates that there is no progression from BFS to ALS so that he can hand it out to people.

Having said that, it's very difficult to cope with new symptoms when they keep popping up - my latest is the rubbery feeling in my hand & wrist muscles. This morning I started getting very fine fascics in one area in my hand which have buzzed away for a few hours.

I suspect I'll probably end up going back to the neuro again & possibly request a repeat (& more detailed) EMG) - the original one sampled only 5 areas. I wonder how many paranoid BFS'ers end up having multiple EMG's!

I have a 10 month old daughter to worry about & this is starting to take over my life again :(

I believe you mentioned a paper which showed that 6.7% of ALS starts with fascics alone. I mentioned this to the neurophysiologist & asked him if he could tell me what the negative predictive value of a normal EMG was, but he didn't know. I haven't been able to locate this paper, only the abstract. Do you know if these 6.7% had normal EMG's in the early stages?
 
dwl,

good to hear about your neuros statement about the BFS incidence
and the biochemist's confirmation of exercise related CPK elevation :)

I assume the clinical paper that yor neuro mentioned was the well
known Mayo Study (a follow up of 100+ BFS-patients (by definition
all with clean EMG!) over an avaergae of 7 years where *none*
developed any form of MND)
you can read the full text here:


As for the other Study about the 6.7% twitching-onset ALS cases,
unfortunately I haven't been able to get a copy of the full text yet.
It is not avaiable online nor have I found a copy at local medical libraries.

What I do know from "second hand" (older posts at the MGH forum about the study) is the following:
1. those 6.7% were the ones that presented with fascics as the only
complain (i.e. they went to the doc beacsue of fascics only)
2. with theses patients fascics were also the only *physical sign*
upon neuro examination (I do, however, not know wether this also included a negative EMG (I strongly suspect, however, that the EMG
would not have been negative in this cases)
3. The mean time before the onset of more serious symptoms like weakness was 7 months (2.4 to 13.4 months)

Anyone any more informations about this study ?

The third point I find rather discuraging, since it sets the time frame
for our "BFS waiting game" to over a year before you are finally in the clear. (not to mention those anecdotal stories on the web, where
PALS report two or three years before weakness onset :(

However, I think with clean EMGs you can put your mind at rest much earlier (I assume most of the 6.7% twitching-onset PALS would have shown EMG-abnormalties much earlier before weakness onset)
Generally, as far as the negative predictive value of EMG tests is concerned, there is contradictory information:
Among forum members the consensus is that every EMG will almost always detect any MND, no matter how soon in the desease process or
how many (or few) muscles tested.
However, there are more prudent statements from neurologists or ALS specialists (for example at the Cleveland Clinic neuro forum) stating
that only after 6 months to 1 year after sx onset could a EMG completely
rule out ALS...
Peronally, I feel that the truth lies somewhere in between and that
a clean EMG (even if done soon after sx onset) should at least very very reassuring. Note that in the Mayo study out of 100+ clen-EMG-twitchers not a single one developed ALS !

Unfortunately, I have not had an EMG yet out of fear (partly of a
possibly positive result and partly out of fear of a false positive result)
but thats another story (see my separate post from NOV 10)
 
If the chances of getting als are 1 in 100,000, and the chances of als appearing with twitches only at onset of disease is 6 to 7% of all als cases, then that means the chances of someone getting als that presents itself with twitches only at onset is somewhere around 1 in 2 million!
Are my figures wrong? What are you guys worried about? Even I can't worry that hard.
 
Oh, we'll find a way, reality be damned!

;)

just had my first neuro apptmt yesterday. He was very nice about it, and referred me to someone he called one of "the global experts" in ALS to ease my mind. He didn't do an EMG, I imagine he'll let the specialist do that. That said, without me even mentioning ALS, he knew what was going on..."We get a lot of people in here with fasciculations, who have been reading things on the Internet..." *grin*. To be honest, it's anecdotally comforting that my situation is common enough that he recognizes it on sight, and ALS is so uncommon, I wonder if he's ever had a case, much less a case with someone under 40.

Fingers still crossed, but feeling a bit better!

jesse.
 
jblack

Are you going to see Dr. Miller. If so, is it hard to get an appointment?
He is supposed to be one of the best Als researches arround.

Astrix
Here is a response from the wellknown emg expert P. Fabre to the "famous" 6.7% study you are so concerned about
hope it helps

Yes, I agree that patients with ALS may present with fasciculations. In one report (letter), 6.7% of ALS patients had fasciculations as an isolated, initial manifestation of the disease (Eisen and Stewart. Ann Neurol 1994;35:375-376). """Practically, all the patients I have seen got the fasciculation (if present) with other signs of denervation and neurogenic MUPs of variable degree""". [/b]
 
I am, yeah. How did you know? did I mention that in an email? Anyway, I think it's very hard to get an appointment. The guy I did the initial consultation with was very nice, however, and got me something pretty quick (3 weeks) because he didn't want me to worry. I didn't even ask for it -- he just thought it would be a good way to relieve my anxiety.
 
in addition to what arron wrote, if you imagine that by age 40, 6% of the population has experienced BFS to some degree, then it should hardly be surprising that 6% of the people who develop ALS also experienced twitches prior to developing weakness. of course 6% in the general population may be high, but mix that in with some people being out of tune with their bodies, and that 6.7% doesn't sound to be much of a stretch.
 
7tidalwave,

this is a very intersting point:
I, too, have always wondered whether those 6.7% with fascics onset my be just coincidential.
(and again: this depends from the
frequency of BFS in the general population).

I could imagine that part of the observed fascics were indeed coincidential if the 6.7% number was obtained retrospectively, i.e. if the ALS patients were just asked: "which was the very first sx you remember"
Then it would be plausible to assume that a considerable fraction of the patients,just reported
some sporadic twitching prior to onset which, in reality, had nothing to do with their ALS.

But, unfortunately, AFAIK this was
not the way, the 6.7% number was obtained in the study: IIRC the
6.7% were those who PRESENTED with
fascics as the very first complaint
(and only physical sign at examination !) at the neurologist. (This, btw., also suggests that the actual number of those who first experienced fascics
(but did not go to the doctor before weakness) was higher than 6.7% )

So if the fascics were already severe enough to see a neurologist (probably referred to from the GP) then it's hard to imagine that the connection
to ALS was coincidental.
Furthermore, there was no comment
from the authors of the Study about the "coincidental fascics" possibility.

Nevertheless, we should keep in mind that the above considerations
did not include EMG or elapsed time
as a fcator.
So despite the above caveats, I still think that with a
clean EMG you have nothing to worry. Because that's what the other one of the two famous studies (the Mayo Study) has proved :)
 
Asterix, no matter what that "6.7%" study said, facts are facts and twitches associated with the disease ALS are caused by one thing and one thing only, a SECONDARY reacton from dying nerves and muscle tissue, period. There is no grey area or wish-wash there. If there were any other twitches going on that made someone feel they needed to see a neuro and later ended-up developing ALS, then whatever those twitches were, they were obviously NOT benign. If they were benign, then it is 100% the opposite of what the famed Mayo Clinic study concluded that NO ONE with BFS EVER developed ALS.

You said; "IIRC the 6.7% were those who PRESENTED with
fascics as the very first complaint (and only physical sign at examination !) at the neurologist. (This, btw., also suggests that the actual number of those who first experienced fascics
(but did not go to the doctor before weakness) was higher than 6.7% )"

There is a key word in there and it is "complaint". Of course if a twitch presents and the weakness isn't "noticable" right away because the muscles affected aren't one's that are normally used for daily tasks, one might conclude that you could indeed have twitches that "presented" first, but again, the fact of the matter is, ALS twitches are caused BY dying muscles NOT the other way around. Twitches do NOT kill muscles. Twitches do NOT "cause" ALS and benign twitches have nothing to do with ALS in any way, shape or form. These are simple facts with no area for margin. That line between fact and fiction is razor sharp. Have you seen ANYONE on ANY of these forums, and we're talking some people that have twitched for 2 and 3 decades here, develop ALS or ever even have ALS for real? I have seen one person out of literally thousands and thousands actually have ALS BUT his symptoms were certainly in line with ALS and not BFS because his had was weak and he could no longer make a fist or move his fingers when he noticed his twitches and decided to post on one of these sites. If there are thousands and thousands of twitchers out there, then it is probably safe to say that "some of them" should have ALS according to that 6.7% study of twitches only as a first "detectable" sign. No one has posted anything like that nor has anyone even talked about someone like that. Maybe on the PALS site, yes, because if no weaknes was "noticed" at first yet a twitch was, that doesn't mean an EMG or a focused clinical exam wouldn't pick any other signs up. If there is twitching going-on caused by ALS, then an EMG would most certainly pick-up sharp waves and denervation, IF the EMG was done near the affected area. I mean, you can't test your big toe for ALS if you have a small twitch in your throat. Several areas need to be tested and does that 6.7% test actually give specifics of that? Nope. Does it say an EMG was ever even performed? Nope. Does it say that a "thourough" exam was performed or was it just a basic evaluation of strength by maybe a doctor that was late for lunch or golf? Who knows? I can tell youi this though, there is at least 6.7% of the doctors out there that couldn't find their way out of a paper bag and got their license and credentials out of a Cracker Jacks box and that in itself may explain why only fasciculations were the only presenting symptom.

Also, I have heard a lot of talk lately about Gulf War Veteran's being at a much higher risk of developing ALS than the average "Joe". There were several articles by world renowned neuro's on the subject of "who get's ALS and why" and the conclusion was that it was much more common for people with a lean, slender build and long muscle fibers to develope ALS than someone that is over weight or out of shape. Well, I haven't seen too many fat, out of shape soldier's out there. Officer's maybe, but not real soldiers that train daily and actually fight in the field instead of sitting in a hidden bunker, eating donuts and watching the action on closed circuit satalite TV. This "may" be one of the reasons why a higher percentage of soldiers develop ALS.
 
Thank you Aaron!! I was looking at the other posts and thinking what are they talking about? I have been twitching for 6 months now and am almost totally free of the twitches. The onset of my symptoms happend one day with fasc. all over, so yes BFS can start like this and over time they have become almost nothing. So it is true that they can start very strong and all over the body one day for no apparent reason. The most important thing to do here is to relax and stop over analyzing. You will cause symptoms to occur that may not even be there. Twitching without weakness is NOT ALS. Live your life, be happy, find a hobby, and stop worrying. Thanks for putting things back into perspective again Aaron.
 
Nole,

sorry for the misconception:
my posting was not at all meant
to worry/scare anyone.

I totally agree with Alonzo:
Really no need for concern if fascics are due to BFS as confirmed by EMG :)
I tried to emphasize this at the end of my posting to show that there is no need to worry for BFSers.

This was only meant to be an "academic" discussion about some interesting statistical details of the "6.7%" study.


:)
 
Asterix, you did a good job posting and I wasn't complaining or trying to undermine what you were saying. I just wanted to point-out that even though a study was done and there were 6.7% of the total ALS patients that "complained" of twitches only as a first symptom, that doesn't mean that their doctor was actually paying attention or doing a good job or that maybe an EMG was or wasn't done or in the right places.

I just didn't want anyone to get scared because of one simple study that might very well have been taken out of context and we ALL know how ANY study can be swayed or tainted...we've all seen studies where doctors stuff a 1 oz. mouse with 2 oz. of sacchrin and make it cause cancer. I mean, if we ate 5 pounds of apples a day, we'd probably end-up with some kind of stomach or intestional cancer as well. It's all has to be taken into perspective and at face value. I mean, who can even eat 5 pounds of anything in one day and what mouse can eat 2 times his body weight (in sacchrin only) in one day, day after day. OF COURSE the mice got cancer, duh! Great studies huh? And that my friend, is why all of that old information about so many common things causing cancer have been recalled. I believe the 6.7% study is every bit as tainted and full of inaccurate information and with ALS twitches being the way they are, it is obvious the test was incorrect...
 

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