time between fascs and weakness

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time between fascs and weakness

Postby earl grey on December 25th, 2002, 2:56 pm

Hi. I joined up today after having limb jerks that started in Sept which dominated until Novemeber and this month (Dec), things to have become more subtle with fascs within muscles themselves (far less jerks now for some reason :? ). There's an awful lot of discussion about 'weakness' within the forums but I can't seem to find much on at what stage the weakness becomes apparent. Most days i wake up thinking 'will this be the day that I can't pick that cup of coffee up?' Just wondered when i might be able to rid myself of this one. Do you have to reach a threshold of time before it's improbable that the weakness/atrophy will manifest itself?

Thanks for any replies.
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Postby twitcher(nli) on December 26th, 2002, 9:29 am

Hi Earl,
what you are describing sounds like it could very well be BFS. I get the limb jerks and fascics. You should see a Neurologist though. Mostly to put your mind at ease. An EMG should rule out any nasty diseases.
As most of us here know, it isn't hard to 'think' you're getting weaker. The mind is very powerful.
Good luck
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Postby dwl on December 27th, 2002, 5:45 pm

Here are a few stats:

1. ALS/MND is very rare

2. 93.3% of ALS cases start with weakness, the fascics follow later

3. 6.7% of cases present with fascics alone - in a published paper, the mean time for progression to weakness was 7 months, and the longest case took 13.4 months.

4. There are NO published cases of anyone with a normal EMG going on to develop ALS/MND


For peace of mind, I would recommend seeing a neuro & having an EMG.
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Postby evans on December 29th, 2002, 12:02 am

I could only find 1 documented case of a normal emg and fasics leading to als. This was presented at a european conference of neuromuscular experts. I personally have had fasciculations for 9 years with "muscle jolts" starting 2 years ago, I would nearly fall off my kayak with the body jolts. Pretty damm scary. Like the previous posts have stated most cases of als don't even notice fasics, the weakness comes first. Don't let the fasics disrupt your life, I've wasted a lot of hours worrying about als, hang in there.
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Postby Arron on December 30th, 2002, 2:21 pm

Keep in perspective, that study about the "6.7% of cases present with fascics alone" was misleading and not one of the patients had an EMG at that point, which if facics caused by ALS were present, there is NO WAY that an EMG would have missed it, if it was performed correctly.

Facisc caused by ALS are a SECONDARY condition CAUSED by dying muscles and nerves, NOT the other way around. Fasics do NOT "cause" ALS what so ever, and again, if they are present because of ALS, weakness or not, the EMG WILL pick it up.

That "6.7%" test was VERY misleading and out of context. It meant that 6.7% of the peopel "noticed" fasics first. Well, if ALS starts in a large muscle group, it may take some time for it to render that muscle useless, and for weakness to show-up, but if it's in a hand or a finger or a foot, it certainly will NOT take very long for weakness to set in because the muscle size and density is much less, which in turn, means that it will take much less time for effects to happen in smaller muscles.

ALS is not a mystery disease, it has boundaries and borders and it is really a quite simple disease with devestating effects. There are also rules with it and one of them is that fasics with ALS are secondary. There are no if's, and's or but's about it. If you are worried and can't wait a span of time to see what happens, then get an EMG and if you had ALS with twitches, that would mean it has already taken hold and would not be missed if the EMG was performed and read correctly. It's pretty much as simple as that.

About the waiting up to 13.4 months deal... that is another statistic taken out of context. ANY disease has grey areas along with black and white areas. Things can get misdiagnosed, tests mis read or misperformed and so on. There are also lots of quack doctors out there that just don't pay attention and so far, that 13.4 months thing was ONE person! Out of all of the worlwide cases of ALS, which are VERY small numbers compared to just about ANYTHING else, one person had the misfortune of finding out 13.4 months later that someone along the line (incompetent doctors) were not paying attention.

ALS is real, if it is in your body, doing it's thing and you have fasiculations CAUSED by ALS, a GOOD doctor who knows how to perform an EMG CORRECTLY and read it CORRECTLY could certainly find-out what is going-on and it certainly wouldn't take 13.4 months to figure that out.

You know, some people die of cancer in a short amount of time and other's life for decades after a bad bout of cancer. It is all in how and when it is diagnosed and treated. I'm not saying that ALS can be treated, because so far, it can't be with any effectiveness. What I am saying is that even with something as common as cancer, where 1 in 3 of us will most likely get it in some form or another, there are strange scanarios and there are black and white scenarios. It just depends of the patients awareness of their own body, the skill and experience of the doctors and finding it in time to do something about it. ALS is exactly the same way EXCEPT for the ability to do something about it part.

How many people do you know that had a cough and the doctor said it was just a smoker's hack and later-on that person ended-up with serious lung cancer? I know several friends that have had this happen with lung and throat cancer, where doctors just blew it off as nothing. They'd call it "smoker's hack" or "wiskey voice" and two friends of mine recently died because of two different doctor's lack of concern, lack of knowledge and inability to do their job.

So, what does this have to do with ALS?, well everything! If this cancer misdiagnosis stuff happens so commonly with people we know personally, then why would it be a mystery that one or two doctors out there could misdiagnose or blow-off something as rare and as serious as ALS, such as in that 13.4 months before being diagnosed or the so called 6.7% presenting with fasics alone?? Of course there are going to be scenarios like that, but it isn't because of an ALS mystery, it is because of mistesting or incompetent doctors and like I said before, not one person in that 6.7% study had an EMG at that point. That's a pretty crappy statistic then, isn't it!

So, quit overanalyzing these out of context statistics and move-on! See a GOOD neuro with experience and get an EMG if you have any doubts. It's pretty much as simple as that...
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Postby dwl on December 31st, 2002, 3:28 am

Arron,

Perhaps I didn't explain this very well - NONE of the people in the 6.7% study had an EMG done at the start of their symptoms, including the 13.4 months person. IMHO this study supports rather than challenges your view that a clean EMG means no ALS/MND.
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Postby Arron on December 31st, 2002, 11:55 am

dwl, "I" know that, and "you" know that, but the person you were diredcting those "statements of facts" to certainly didn't, so I was trying to shed some light on it for him so you didn't scare the hell out of him and make him wonder if he may be one of those 6.7% of the people that get ALS with fasciculations only, or one of the people that needs to wait 13.4 months before they can start to relax a bit. Those studies were so bogus it is pathetic.

If anyone is going to post information on statistics, BE SURE to include ALL of the facts. Some of these people are on the edge of a nervous break down or totally freaking-out and all you said was, and I quote;"6.7% of cases present with fascics alone - in a published paper, the mean time for progression to weakness was 7 months, and the longest case took 13.4 months." That to me sounds like viable facts and would be cause for concern, and that is SO not true and taken out of context, hence why I started my reply off with "Keep in perspective..."

I'm not trying to be a *beep* or anything here but if people going to post facts and try to "help" someone, then they really have to thinl about what they are posting and how the person reading it is going to interpet it, or at least provide ALL of the facts to back-up the statements so someone doesn't go off the deep-end over some crappy, biased statistics.
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Postby dwl on December 31st, 2002, 1:56 pm

Arron,

I would respectfully point out that my last sentence was:

"4. There are NO published cases of anyone with a normal EMG going on to develop ALS/MND"

which I made a point of putting in so that nobody freaked :-)

I don't think there is any suggestion of misdiagnosis in any of the "6.7%" people - I suspect that their neuro just asked them how long they had fascisc for before they came to see him, i.e before they came within a mile of having an EMG.

So - the bottom line is, if you have fascics and a clean EMG you have nothing to worry about.

David
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calm down lads

Postby earl grey on January 1st, 2003, 6:29 am

Hey. Iv'e always wanted to know what it would be like for a girl having guys fight over her! Now i know. Thanks to all for those excellent and lengthy replies. Aaron, if you didn't spend so much time on these things then maybe 'Grandma' wouldn't have to come over for baby-sitting quite so often eh?

Take care.

Earl
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Postby Asterix on January 2nd, 2003, 8:44 am

Arron,

I really appreciate your great and valuable contributions to this forum which has always been a GREAT source of reassurance for worried BFS-sufferers.

Having said this, I'd just like to ask you to try to stop jumping/attacking on everyone
who posts references & sources to scientific/statistical
information here.

It would be a pity if people
would be scared away from posting interesting scientifically researched data in this forum.
This forum is intended to
exchange INFORMATION about BFS and this surely includes scientific studies and statistical data about
sx patterns and probabilities.

Of course I know the caveats and fallacies and potential for misleading information with
scientific studies but I suggest to discuss them in more a factual way
(e.g. how about also supporting claims with objective sources ?)

If, however, the mayority of the forum members feels that this is not the right place for discussing scientific/statistical facts and information about BFS/ALS (
I understand that this might be indeed problemtic because of the potential misunderstanding of data or unecessarily scaring
people who are already definitely diagnosed with BFS by reading information about ALS or the differntial diagnosis between ALS and BFS)) then I suggest to open another topic area (sub-forum) dedicated solely for the discussion of scientific/statistical information about BFS and its differntation to ALS.

Again, no offence Arron ! your contributions have been invaluable and very well appreciated.
And I'm sure that your emotional empathetic posts have brought many
times more reassurance and comfort than any "cold" medical study ever could. Nevertheless I find it important to also have a place to discuss those "cold" and maybe sometimes scary medical facts.
But, again, maybe this topic-area is not the right place and we sould open a separate discussion area for that.

I just feel we should clarify how we deal with the scientific/study statistical-information-issue that in my opionon also deserves it's place somwhere on this BFS-site.

Thanks and Regards,
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Postby Arron on January 3rd, 2003, 12:13 am

OK, first of all, where does it say ANYTHING at all in the information or "statistics" that dwl posted say that none of the 6.7% of the people in that so called "study" ever or never had EMG's?, let alone clean one's? I knew it said that in the actual study and you know it says that in the actual study, but ANY reader on here doesn't know about the study or hasn't read the whole thing certainly doesn't know it because you didn't say that!

There is nothing in this statement you posted; ("There are NO published cases of anyone with a normal EMG going on to develop ALS/MND"), that says ANYTHING about these 6.7% of people having an EMG at all, let alone a clean one. One reading that for the first time would assume that it means what it says, that 6.7% of the people presented with twitches only, NOT that 6.7% of the people "presented" with twitches BUT also had abnormal EMG's. Well, twitches with an abnormal EMG is hardly a benign condition in the first place.

Because of this, I would think that a newbie would read bogus statistics like that and think to themselves; "gee, I hope I'm not one of those 6.7% that have twitch only onset". There was no 6.7%, thay ALL had bad EMG's once they were tested!! Well, without having a single person with a clean EMG and twitches only develop ALS, that 6.7% doesn't exist! Saying that no one with a clean EMG ever went on to develop ALS says nothing about those 6.7% of the people OR that 13.4 month person at all. It is a separete statement.


earl grey, you lost me with your post... "Grandma's dead"... I'm on here because I want to be on here, not because I have to... I want to help people with facts, not scary, unfounded statistics.


Asterix, I wasn't "attacking" anyone. I was simply pointing out that the statistics posted were untrue and inaccurate and that the test results in that "6.7% study" were bogus so that other people wouldn't read it and get scared. I don't dismiss accurate information or unbiased studies with accurate results. It's only that one test... so I have no idea where you said that I am always putting down or attacking tests and statistics...

No, we don't need a separate "statistical area" for dicussion. What we need is FACTUAL information. I mean, if someone is going to post something as facts, they need to be facts. That 6.7% study and that ONE person that took 13.4 months to develope weakness is hardly a "study" when they ALL had abnormal EMG's once they finally did EMG's on those people.

This is exactly what I meant when I said, it is like having a hoarse voice, and you go see a doctor and he says, "oh, it's nothing... it'll go away". Well, all YOU noticed was the hoarsness in the beginning and being that the doctor did NO tests, you ASSUMED you didn't have cancer. Does that make it so?

When it is finally found out to actually be cancer and your biopsy comes back malignant, does that mean your wisky voice "turned into" cancer or that your cancer only "presented" with a hoarse voice? No way! It means that the doctor didn't FIND anything at first because he didn't TEST for anything at first!, which does NOT make it a FACT that cancer starts with nothing more than a hoarse voice. There was obviously something there making the voice hoarse in the first place other than something benign, so does that mean it gets to be published as a fact that this particular cancer only presented with hoarsness? Well, that's what the other study is saying.

With that, if statistics like that were posted for people on a web site with hoarse voices, and someone came on there saying their cancer had no clinical signs at first and it ONLY presented with hoarsness. Is that accurate information to be giving other people to read? It is EXACTLY like that 6.7% study, where NO tests (EMG's) were performed until AFTER ALS was suspected and then their EMG's ALL came back abnormal... That does NOT mean or make 6.7% of the people had fasics only onset.

Look, I am only trying to make things clear, so people understand the truth. ALS is no mysterious disease. It isn't black magic or anything like that. Actually, it is a pretty straight forward disease with some pretty black and white rules. If we are going to support people on this web site, the information needs to be clear, accurate and understandable. I wasn't "attacking" anybody and I have no idea why you said I put down test results. That test maybe, but not truthful and accurate tests...
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Postby dwl on January 3rd, 2003, 7:02 am

Arron,

I don't understand what the disagreement is here. I posted that 6.7% of ALS cases had "twitch only" onset - I also said that no-one with a normal EMG has ever gone on to develop ALS. Ergo, if you have twitches and a normal EMG, you have nothing to worry about. By implication, the 6.7% group would not have had normal EMG's. This seems to be quite clear in my posting and I'm sorry if you feel that I left it open to misinterpretation.

The authors of the (very reassuring) Mayo clinic study also confirmed that in their experience a similar proportion of ALS patients presented with twitching alone. This would seem to refute any suggestion that the study was biased, bogus or inaccurate.

Like it or not, a very, very, very, very, very, very tiny proportion of people with only twitching as the presenting symptom will go on to develop ALS - BUT these people WILL ALL have abnormal EMG's when they are tested when they first present. I would guess that this will apply to a thousandth or millionth of a fraction of a percent of people with twitching.

I appreciate that this may be only 99.999% reassuring for some people as opposed to 100%, but I think that reassurance is more valid if it reflects all the known information.

Once again - people with normal EMG's DO NOT and WILL NOT develop ALS.

I would also like to add that I am very grateful for all of the work you put into answering questions on this forum - I found your posts very helpful when I first developed symptoms.

David
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Postby Asterix on January 3rd, 2003, 11:37 am

Arron,

you're right: "attacking" was probably not the right word (wasn't meant in an offending way) I just have the feeling that we shouldn't dismiss
hard statistical/medical information in such a "harsh"/emotional way.

It was my impression that scientific studies tend to be harshly rejected if they contain any facts that may not be so reassuring.
So I'm afraid that this eventually results in keeping people from posting
information that may contain less reassuring facts while at the same time
strongly encouraging people to only post facts that contain reassuring
information. So this could potentially lead to a kind of "sugar-coating-filter".

But I really think that reassurance is much more valid if it reflects *all* the known information.

And as far as the 6.7%-discussion is concerned: I can't see what the
disagreement is ! Whenever this study has been referenced in one
of my (or other's) posts then it was almost always accompanied by
caveats/"disclaimers" very clearly stating that the numbers must be interpreted very carefully. It has always been pointed out that
no EMG's were performed and I always took care to add a refernece to the reassuring Mayo-Study IN THE SAME POST in order to
put the 6.7%-study well into perspective.

And yes, your caveats against statistics are very well taken and yes of course: it can't get said often enough that such studies are potentially misleading and must be interpreted very carefully.
But nevertheless, I do think that it should be allowed to discuss such
statistics more calmly and factually in such a way that a poster need not get the impression that it's necessary to justify him/herself for posting
such information.

Regards,
Asterix


P.S.: I liked your hoarse-voice & cancer example: a nice illustration of
a typical statistcal fallacy ;)
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Postby twitcher(nli) on January 3rd, 2003, 2:32 pm

~~WARNING, NEWBIES SHOULD NOT READ THIS, AS IT MAY MISLEAD YOU~~
Heh, I guess I should jump in on this. Here is a fact, some people with ALS PRESENT with twitching only. 'Present' being the observable signs of a disease process.(dying muscle tissue) It is also fact that one can have a clean EMG and still have early stage ALS. An EMG is only as good as the doc performing/interpreting it. There are people who have ALS that had clean EMGs initially. It's is doubtful that a well-done EMG would miss ALS, but it can happen. For us BFSers, it is hard to accept that, but it is true.
I've notice that some like to think that ALS is a black and white disease. This is not true. ALS is a highly personal disease. It is not the same in every patient. Sure, there are general patterns, but it can start in nearly any muscle. It can kill you in a year or you may live 20+ years with it. (Stephen Hawking) Some have cramps as their presenting sx. For others it's weakness. An ALS dx is a differential dx. It is diagnosed by ruling out other diseases. There is no one test that says you do or do not have ALS. This is not my opinion, but the opinion of a Cleveland Clinic Neurologist.
As far as the study post goes, I think it is being blown out of proportion. Ok, there may have been a little misunderstanding of the results at first, but now that has been cleared up. I see nothing in the post that is purposfully misleading. Heck, anything we post can be misinterpreted. What is important, IMHO, is to get the facts about BFS out there. Scientific data may be hard to understand at first glance and it may cause some anxiety, but that doesn't make it invalid. It makes no difference whether the patients in the study had an EMG. Their initial sx was twitching. Not weakness, not cramping. Sure, an EMG would have probably shown abnormalities. The point is, if they see a Neuro and he says "benign facsics, no need for an EMG", he may be wrong. Months later that same person may develop weakness. They may have initially had what appeared to be benign facsics(especially if the Neuro exam is normal), but as time went on, the true cause of the twitching became apparent.
No one said that benign fascics cause ALS, but twitching associated with ALS can be misinterpreted early on.
To all of the newbies that ignored the warning, get an exam and an EMG at a good clinic and then relax. The odds are vastly in favor of you being ok. You have more to worry about driving home from work. ~40,000 die in car crashes every year. Only 5,000 cases of ALS are dx every year.
One other point, one can have completely benign twitching and go on to develop ALS later in life. The two would be unrelated, but it can be expected to happen to about 1 in 100,000 twitchers. :wink: That may account for the one case where BFS supposedly led to ALS. It probably didn't, this unfortunate soul probably had both.
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Postby Nole on January 3rd, 2003, 7:52 pm

This goes to everyone who has posted on this forum. I personally think that this 6.7% discussion should be dropped. It is very confusing, misleading, and honestly I am not sure what it means or what all of you are trying to tell us. It has been spoken of so much and argued about that I dont even know what the real issue is about anymore. ALS is a very fast disease that is relentless, when you twitch your muscles die, and you have PROFOUND weakness. This is not the case with almost all of us, yes there are some exceptions to the rules but all-in-all thats how it runs its course and a good doctor can tell you have it when you walk in the room. So instead of over analyzing everything go out anf live your lives it is much to short to worry about something you might get. Some of us are going to die of heart problems, cancers, accidents, etc.... but you cant waste your days worrying about that, you will let your life pass you by. NAd in realty yes we are all going to die someday so live for today dont worry about tomorrow. BFS is not fun, but you know what you CAN get over it (the twitches may never go away but you can get past that). There are so many other people that do not have benign problems that go on better than some of us do. We need to remember to support each other on this site because many people cant understanding what we feel and go through. Lets try to remember that, support each other, live our lives, and stay positive. I value all of your comments and suggestions, but sometimes we do get too rapped up in the statistics and obsessions that go along with BFS. Spend your time supporting others, live your life, and be happy. Thats all that really matters in the end.
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