I've had it with all those contradictions

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I've had it with all those contradictions

Postby Frederick on October 26th, 2008, 8:42 am

Hi all,

Over the last 48hours I've been exploring all posts here.
I have to say that I found a lot of contradictions here, so I need some answers please!

1. I read that 6.7% of *** patients come with twitching as only symptom and that they get weakness in 1 tot 13.4 months with an average from 7 months (posts from Jeff)
----> so have those patients been dx with BFS first?
----> does this mean they got CLEAN emg's at first? (they say they did in those reports)


Because if they got the dx bfs first those cases aren't rare anymore. I read here that there are only 2 worldwide cases know from someone that has been dx with BFS and got ALS at 1 year of twitching

2. I also read here a lot that a clean emg means no als. But when I read the stuff from that 6.7% I read that Arron answers with 95% sure and sh*it happens -> I'm sorry but do you know what you are talking about if you change your opinion ?

3.If it's an average of 7 months this means that a lot of patients get weakness around the 10-12 month, how come almost all our neuro's dismiss us???

4. Do those people get the answer they are ok and they go back in when they get weakness? Because than the rare cases aren't that rare anymore. We are not talking about 2 worldwide cases but almost 7 out of 100 als patients. That's huge!


I hope you all understand my worries but I don't want to lie to myself, I just want the truth. I don't want to say everybody here is going to have als - not at all - that nobody has got it over the last 6 years is a good sign but I don't understand all those posts, reports and studies anymore they are full of contradictions.

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Re: I've had it with all those contradictions

Postby nervousguy1 on October 26th, 2008, 9:10 am

Frederick wrote:Hi all,

Over the last 48hours I've been exploring all posts here.
I have to say that I found a lot of contradictions here, so I need some answers please!

1. I read that 6.7% of *** patients come with twitching as only symptom and that they get weakness in 1 tot 13.4 months with an average from 7 months (posts from Jeff)
----> so have those patients been dx with BFS first?
----> does this mean they got CLEAN emg's at first? (they say they did in those reports)


Because if they got the dx bfs first those cases aren't rare anymore. I read here that there are only 2 worldwide cases know from someone that has been dx with BFS and got ALS at 1 year of twitching

2. I also read here a lot that a clean emg means no als. But when I read the stuff from that 6.7% I read that Arron answers with 95% sure and sh*it happens -> I'm sorry but do you know what you are talking about if you change your opinion ?

3.If it's an average of 7 months this means that a lot of patients get weakness around the 10-12 month, how come almost all our neuro's dismiss us???

4. Do those people get the answer they are ok and they go back in when they get weakness? Because than the rare cases aren't that rare anymore. We are not talking about 2 worldwide cases but almost 7 out of 100 als patients. That's huge!


I hope you all understand my worries but I don't want to lie to myself, I just want the truth. I don't want to say everybody here is going to have als - not at all - that nobody has got it over the last 6 years is a good sign but I don't understand all those posts, reports and studies anymore they are full of contradictions.

Frederick


1. The report does not say if the twitching is isolated or spread all over your body with pain sensations like us do
1b. Clean EMG does not mean you dont have ALS. If your upper motor neurons get damaged first, it will not show up on the EMG. There are however, some reflexes that show up when the upper motor is damaged.. like the babinski / hoffman's sign. And brisk reflexes.. where you will keep giving kicks after 1 slam on the knee. Twitching is NOT a sign of upper motor damage; its can be a sign of lower motor damage so if it was ALS it will show up on the EMG.

1c. I believe it was some old guy ( 60+ ) who had an abnormal EMG, but was believed to be normal since he was old and the spinal cord sometimes gets damaged when getting older.

2. Because you have BFS now does not mean you will never die of cancer; ALS can strike anyone.. but 90% of the cases are people older then 45.. the last 10% is usually near that age.. cases near the 20's have been reported like stephen hawking, but are so rare.. maybe 1 in the few million. Arron cannot guarantee that you will never have ALS. Infact, most neurologists always say the same when your being diagnosed with BFS. *beep* happens.

3. Its because most people who have ALS get weakness first and can hardly walk into the neurologists office. People who only have twitching, tingling sensations, false cramp / pain sensations and muscle fatigue fall under the benign category.

4. Same answer as 1. If it was so frequent then there would be a MAJOR investigation if BFS is related to ALS.

Your questions made me freak out tho.
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: I've had it with all those contradictions

Postby Frederick on October 26th, 2008, 9:45 am

I don't want anyone to freak out be if you are honest it's full of contradictions here

Now you even say a clean emg does not mean you don't have als. I read at least 500 times here that clean emg is no als. So why do they say it when it is not true? Also I read a hundred times here that an emg will pick up a signal in any body part if you are twitching and now you say it doesn't? I'm sorry I don't get this anymore. What's the use of a forum like this when there are a lot of contradictions? That's way everybody is still scared of als because of all the contradictions here.
I definitely don't want to scare anyone, you are probably all ok but I don't like facts and posts that aren't true.
Bottom line is, we have to trust our neuro's and hope they got it right.
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Re: I've had it with all those contradictions

Postby nervousguy1 on October 26th, 2008, 10:20 am

Frederick wrote:I don't want anyone to freak out be if you are honest it's full of contradictions here

Now you even say a clean emg does not mean you don't have als. I read at least 500 times here that clean emg is no als. So why do they say it when it is not true? Also I read a hundred times here that an emg will pick up a signal in any body part if you are twitching and now you say it doesn't? I'm sorry I don't get this anymore. What's the use of a forum like this when there are a lot of contradictions? That's way everybody is still scared of als because of all the contradictions here.
I definitely don't want to scare anyone, you are probably all ok but I don't like facts and posts that aren't true.
Bottom line is, we have to trust our neuro's and hope they got it right.


ALS = upper AND lower motor damage. So it will show up on EMG
you can have upper motor damage, but it probaly wont show up. I've only read this somewhere tho.. i cant say this with accuracy
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: I've had it with all those contradictions

Postby jro on October 26th, 2008, 11:52 am

I like you am very perceptive when it comes to obvious and subtle contradictions because I want certainty which I can never get. I think the contradictions are born more from the fact that nothing is certain and different doctors have a different idea of what level of probability approaches certainty enough that the two can be equated in terms of what to tell patients. I have had many mole and breast biopsies and been told they were benign. Then when I did major google investigations and read numerous scientific articles I learned that these diagnoses were judgment calls that never approach 100% certainty and are more in the 95-99% range. If patients were routinely told this they would never stop worrying and doctors don't want patients to worry. You need to keep things in perspective. No one ever has 100% certainty that there health is perfect whether they have symptoms or not or whether they have tests or not. Even though waiting is hard, it is nice to know that the more time goes by the more certain one can be with this illness. This is not true of all things so try to look at it from a positive perspective. I have only been having my symptoms for 4 months and have no weakness. I have been told by an expert that he is 99.9% sure I don't have the disease. He also said that this does not mean there is nothing wrong with me and is has ordered lots of tests to find out what is wrong. The symptoms came on suddenly and are very uncomfortable so they create a lot more anxiety than a breast lump or mole that I can't feel.
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Re: I've had it with all those contradictions

Postby MarioMangler on October 26th, 2008, 12:40 pm

Okay even if that 6.7% statistic were true (which none of us know for sure or not), you have to put things in perspective here. You can't just throw out numbers in a vacuum without looking at what they mean in the bigger picture.

From everything I have read, the general consensus is that about 1 in 100,000 people will develop ALS. Does that sound like a lot? Well then keep in mind that the VAST majority of those cases are old people. Much older than anyone here on this board. So if you're a young person, I'd guess the chances of you having ALS are somewhere off in the stratosphere. Maybe something like 1 in 1,000,000 or something like that.

Now go back and look at that "6.7%" statistic. Look at that in the bigger picture. If you have a 1 in 1,000,000 chance of having ALS in general, what do you think your odds are that A) you could be young, and B) twitching could be your only symptom as well. What is 6.7% of 1 in a million? Want to know what it is? Well here, I did the math. It's about 1 in 14 million.

Want to know why people say "You don't have ALS"? There you go. Even if that 6.7% WERE true, you're still talking about an incredibly small subset of people in general.

Yes sh*t does happen, but it certainly doesn't happen very much.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
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: I've had it with all those contradictions

Postby nervousguy1 on October 26th, 2008, 12:47 pm

MarioMangler wrote:Okay even if that 6.7% statistic were true (which none of us know for sure or not), you have to put things in perspective here. You can't just throw out numbers in a vacuum without looking at what they mean in the bigger picture.

From everything I have read, the general consensus is that about 1 in 100,000 people will develop ALS. Does that sound like a lot? Well then keep in mind that the VAST majority of those cases are old people. Much older than anyone here on this board. So if you're a young person, I'd guess the chances of you having ALS are somewhere off in the stratosphere. Maybe something like 1 in 1,000,000 or something like that.

Now go back and look at that "6.7%" statistic. Look at that in the bigger picture. If you have a 1 in 1,000,000 chance of having ALS in general, what do you think your odds are that A) you could be young, and B) twitching could be your only symptom as well. What is 6.7% of 1 in a million? Want to know what it is? Well here, I did the math. It's about 1 in 14 million.

Want to know why people say "You don't have ALS"? There you go. Even if that 6.7% WERE true, you're still talking about an incredibly small subset of people in general.

Yes sh*t does happen, but it certainly doesn't happen very much.


6.7% of the people who got dx of ALS.. als is rare enough.. but twitching as an onset symptom is even 'more' rare. ;)
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: I've had it with all those contradictions

Postby Bart1 on October 26th, 2008, 1:00 pm

Sorry but I'm not very fond of statistics or calculations. If you are that one in a million you're nothing with those.

But some remarks:
- Is this study real? Anyone can put anything on the internet.
- If 6.7% come with fascics first the neuro's probably saw something disturbing in their twitching and didn't gave the diagnose BFS.
- Like us they haven't got the diagnose BFS because we are aware of only 2 cases from bfs that got into als - and keep in mind that we don't have the full medical history of it
- The 6.7% probably came from 1 study so how reliable is this. My neuro specialized in MND for 40 !!!! years NEVER saw a patient only complaining from twitching (however I seem to think I'm his first :oops: )
- From all the posts I read here most say their neuro said: never seen als patient come in with twitching as only symptom or maybe 1 or 2 times in their whole career
- BFS and ALS are 2 seperate ilnesses: like headache and a brain tumor
-This survey was written on this board in 2002 , how old was it? From the 90's? Doctors and neuro's are way better informed and equiped over the last 10 years.
- Random twitching is never ALS. ALS starts in one limb, like a foot/leg or hand. If you got them random be sure it's BFS or something else than ALS.

Warm regards

Bart
Fasciculating from 20/10/07
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Re: I've had it with all those contradictions

Postby morzani on October 26th, 2008, 2:56 pm

I want to ask you all. what is considered random twitches. I have some twitches in my eyes that they last 1 or 2 days. it may pass weeks or even months and I have some in my mouth, 1 or 2 days, it stops, may pass some weeks , months I have some i my legs , it last a day, pass and so on but I have every days twitches in the arches of both my feet every time, sometimes in calves but very little. My toes move evey days both feet. the other twitches I mentioned before I have had for some years. Eyes many years, mouth nose etc. for almost 3 years but the ones non stop in feet and toes just for one year. Do you think it is bfs?
and the other twitches I mentioned, are they random?
A response would be appreciated. Sometimes I gett worried because I think that my twitches are more localiced , and the other ones are much esporadic so I don`t know if they are random twitches.
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Re: I've had it with all those contradictions

Postby Arron on October 26th, 2008, 3:22 pm

I'm going to have to chime in here because I was asked to. This "study" is about as old as the hills and like many studies, it wasn't performed very well and the statistical outcome was inaccurate to say the least. I feel like I am beating an old horse here because this subject has been covered about a zillion times on this site over the past few years if you just do a search on it. Either way, here is the REAL scoop from someone who really DOES know about it.

First off, quit disuputing what will or won't show up on an EMG for ALS. ALS is a BODY WIDE (upper AND lower) motor neuron disease. By the time you notice a symptom that would prompt you to go see a doctor, it will CERTAINLY show up on an EMG UNLESS your doctor is a complete idiot, is drunk or is in some thrird world country using old, beat-up 1970's equipment.

If you had "twitches" and you went to see a neuro who performed an EMG, if those "twitches" were happening as a result of ALS, they WILL (100% of the time) show up on the EMG, period, end of story. Why is it so definite? Simple, twitches in ALS are a RESULT of the disease ALREADY running its course. Twitches happen BECAUSE of nerves disconnecting from the muscles, NOT as a precurser, so if you have ALS twitches, that disease is WELL into running its course, therefore it WILL show-up on an EMG.

Now lets go beat that old horse with the 6.7% study outcome. The study was done on a given amount of people. They ASKED the patients what THEY noticed first. Not what the doctor found first, but what the patient noticed first, and 6.7% of them said they noticed their twitches first.

What the study didn't say or take into consideration (and what you people don't know yet) is that of those 6.7% people, NONE of them had an EMG until AFTER they went to the doctor! It's like saying you noticed your sore throat before you had the flu. No, you get infected with the flu virus first, then you get a fever and your body reacts by aching and a sore throat. It's your body's defense mechanism fighting the virus that's already infected your system. A sore throat doesn't CAUSE the flu! This is the EXACT same thing with twitches. The twitches (a sore throat) happen becaue the disease is already running its course. What IS the disease anyway? It is a motor neuron disease that affects nerve pathweays which disconnects them from your muscles, rendering those muscles useless from that point-on. ALS is NOT a twitching disease! It's a nerve / muscle disease! Twitching really has nothing to do with it.

Some people may NOTICE a sore throat first, but that doesn't mean a blood test wouldn't have revealed the flu virus running through your system HAD you have gone to the doctor before you FELT that sore throat. "Noticing" twitches and THEN going to see a neuro CERTAINLY DOES NOT mean the disease PRESENTED with twitches first. It simply means 6.7% of the patients noticed their twitches (sore throat) before they realized they had the disease (the flu). It in NO WAY implies or points to the definition that 6.7% of ALS patients won't show a bad EMG if they were already twitching. It simply meant that 6.7% NOTICED they had twitches BEFORE they had their EMG do confirm it. Just like noticing a sore throat before seeing your doctor and having him confirm it's influenza. It doesn't mean influenza wasn't in your system CAUSING your sore thorat already. That study is exactly doing this though and people that don't know get all caught up in the lame and inaccurate 6.7%.

It is a fact that most ALS patients don't even SEE or feel their twitches. They are VERY fine little ripples, NOT big thumpers, bumpers, jumpers, buzzers and here today - gone tomorow twitches that BFS people get. Yes, BFS patients also get hot spots that will twitch for days, weeks and even many months, but again, the twitcvhes are COMPLETELY DIFERENT (I explain this in GREAT DETAIL in my posts "BFS in a Nutshell" and again in "Why You Don't Have ALS"). It is common for ALS patients to have to use a black strobe light to see their twitches because they are so tiny and fine. Again, they are NOT like BFS twitches at all. Not in the way they look, feel or act.

So, that study said 6.7% of the ALS patients PRESENTED with twitches first, and that is correct. That's what THEY noticed, not what the clinical actuality was. The clinical actuality was once they went to the doctor and asked about those twitches, ALL of the patients had dirty EMG's. The entire study was flawed from the beginning, and people like myself and many other veterans on here will COLLECTIVELY and unanimously attest to the inaccuracy of this study. That 6.7% doesn't mean squat! It is a bogus number, just as if I said 6.7% of people suffering from the flu present with a sore throat first. Yeah, well that doesn't mean the influenza virus wasn't already flowing through their system, or that it wouldn't have shown up on a blood test first HAD they have gone to see their doctor. It only means that's what THEY noticed first.

Now, let me explain somethig here about ALS as simply as I can. ALS is a disease that starts and it runs a course, just like a cold or the flu. They all follow a chain of events. There is no mystery behind ALS other than the actual cause. How it runs its course is pretty well documented as is how to diagnose it. It begins by disconnecting pathways of nerves from muscles. AFTER that starts happening the muscle begins to quiver (twitch) in an automatic response to try to fix itself. They call this "a last ditch effort to repair itself". It never does repair itself (and it never will which is why ALS twitches aren't "here today and gone tomorrow". It doesn't come and go!). So, that muscle continues to twitch. As it does this, the disease is slowly spreading from that point-on.

So lets' say it starts in your thumb. You won't notice any twitches UNTIL the nerve pathways have begun to disconnect. Once this takes place, it begins to twitch. In the mean time, the disease is spreading across your hand. By the time you NOTICE those twitches, that thumb has already begun to get weaker. Why? Because your brain can't send information to your thumb anymore to make it function as it did before the disease set-in.

Now, it won't instantly get weak. It'll take a couple of weeks or so for that thumb to become completely useless. Think on a micro scale. You have more than one nerve in your thumb and more than one muscle. If one nerve disconnects, it still has thousands of others connected to numerous muscles that it has to disconnect before that thumb becomes useless. In the mean time, as this is happening, you lose articulation and strength in it. It doesn't happen overnight, nor does it take months and months either.

In the mean time, the twitching will have spread across your hand to the next finger and up into your wrist area. By this time you may say to yourself; "Wow, something is wrong. I can't grab anything with my thumb and finger in this hand anymore.", so you go see the doctor. By this time you may or may not have noticed the twitches. Twitching in ALS is pretty much irrelevant. This is why most neuros don't pay attention to what you are explaining about your twitches when you go see them for the first time. They are concerned about the REAL symptoms..... Weakness, loss of articulation and what the EMG says.

Many people complain about their neuros not listening when they are talking about their twitches, and just like I said, that's because neuro's don't care about your twitches. Twitches are NOT a sign of ALS. Weakness, atrophy and loss of articulation, plus the EMG is what tells the story, so what YOU think is scary isn't what the doctor is concerned about.

So I'll continue. Once the disease begins to run its course, it leaves a wake of destruction in its path. Because you can no longer move that thumb, it doesn't get any exercise so it begins to shribble and shrink (atrophy - wasting or whatever you want to call it).

Now this is where the grey area comes in with ALS. It takes time for this to happen. How much time? Think of it lke this, if you have ever broken a leg or an arm and had it in a cast for 6 weeks, when they remove that cast, that linmb is whiter (because it got no sunshine), and it is MUCH smaller (and weaker) than it was before you broke it. That's what 6 weeks does to a limb, so when ALS sets-in you can figure on this very same thing happening to ANY limb or finger or wherever you are twitching.

In reality, it doesn't take 6 weeks. Your broken limb started shrinking the day it went into that cast and it shrinks at a fairly steady rate from that day until that cast comes back off. So in reality, it would have lost 50% of the amount it shrunk in 6 weeks at the 3 week stage. So really, all it takes is a few weeks for atrophy to show-up once ALS has disconnected the nerves from the muscles. If you have been twitching for a month or more in one spot, that spot WILL show arophy if it was ALS by that time, and you will DEFINATELY have lost articulation in that spot by then. Keep in mind, the twitching is happening because the disease is already underway.

So let's continue. ALS will MIGRATE up through your wrist and across your hand. As this happens, you WON'T be able to pick anything up anymore, hold your cup of coffee or make a closed fist like your other hand. As this happens, it is also migrating its way up your arm. By this time (after a couple of months), that hand is in a relaxed position and it can no longer be used. You KNOW you have ALS by now. There is no doubt. These saye symptoms will begin to happen in othr places on your body. An EMG will show the disease from the instant (actually even before) twitches begin to appear simply because by the time the first micro quiver begins, the disease has taken a hold and is now running its course. It WILl show pops, sharp waves and dirtyness on the EMG.

Now to set something else aside. You do NOT have to have the EMG performed right at the spot of the twitching. This is a misconception a lot of people have. If you have ALS in that hand, you do NOT have to have the EMG needle poked into that hand to see ALS! I don't know how many times we have had to say this on here, and we have even had quotes from several neuros saying the same thing on here. ALS is a BODY WIDE disease. It is not just an upper or lower motor neuron disease. If that were the case, people with ALS would EITHER have loss of muscle control from the waist up, or the waist down, and that isn't the case now is it? It is a system wide disease. It's like saying the flu is a sore throat virus. No, it is running through your whole body, nit just in your tonsils. You do not need to have a blood test IN your tonsils to see that you have the influenza virus! ALS is no different.

Now, are there cases of where one or two people showed a clean EMG and then got diagnosed with ALS later? Sure. Don't people have a lump they get diagnosed as benign and then later-on it was found to actually be cancer? This kind of stuff happens in ALL aspects of the medical area. This is why they say to get a second opinion! Ninety something plus percent of the time, your neuro will be correct. In fact, I can word that even better. Less than 1% of the time they will be inaccurate. Do NOT take that as a literal number, take that as a measurement of scale. In other words, it might be one tenth of one percent. It is all dependant on the circumstances.

As I said in the beginning of this "book" I just wrote here, there are many circumstances that can sway the outcome of your test depending on where you live, who your doctor is and what his equipment and experience is. If you live in Ethiopia or Cuba, you might want to get a second opinion somewhere else, but if you go to Stanford, UCSF, The Mayo Clinic (even though they are the idiots that did that 6.7% study), or ANY really good hospital, your chances of getting an accurate diagnosis is pretty much100%.

So why do doctors say things like "You don't have ALS right now, but come back and see me in 2 or 3 months for another test." ? This is because NO medical doctor on the planet will (or can) tell you you are 100% healthy. You can walk out of his office and drop dead of a stroke or a heart attack. This is called CTA or "Covering Their A*ses". They too want a second opinion for THEM, not for you. If they had any doubt they would IMMEDIATELY schedule for more testing and bring in a few other doctors to double and triple confirm their findings. Trust me, they don't send you home for 2 or 3 months! They can also never say you won't GET ALS. You can go in for a CT or PET scan and not have any cancer in your body, but it doesn't mean you can't get cancer next month, next year or in the next 10 years. ALS is no different. It is all covering their as*es. You just need to be aware of that and not dwell on them saying "You don't have, and/or never will have ALS". NO doctor on the planet will say that.

Just know, it took your neuro almost a decade of studying this stuff to get his degree in neurology. What you learned on the internet (mostly inaccurate information unless you got it from us here), is NOTHING compared to what they know. So what YOU perceive is scary, or as a symptom, CERTAINLY isn't what your neuro perceives as a symptom or what he believes he needs to do to look for this disease. It IS your first day, it ain't their's, so trust them!

Now, please don't try to dispute what I just said here. The #1 thing with BFS is people do all they can to find that ONE word or that ONE person to prove what we say here as wrong. This ain't our first day with this stuff, and trust me, I myself have done more studying on this stuff with more doctors than probably 90% of all neuro's out there ever have. Why? Because BFS is a benign syndrome. I'd be mad if neurologists pulled time away from finding causes and cures for REAL diseases to find out why BFS happens. I on the other hand had a vested interest, not to mention the time and money to devote to it. "I" wanted answers so I went looking.... and found them in many areas over many years. It is the COLLECTIVE information we have here from myself, John, Gary and MANY other's where we have spent YEARS pooling our info and findings on this stuff to give to you free of charge. You won't find that "one" person or "one" case to dispute what we know or say here, so don't waste your time looking. You have better things to be doing anyway.

Think of it like this, People get hit by meteors too you know. There are 2 documented cases where people have actually been hit by meteors. One guy was killed, so are you going to take that "one" case and not go outside anymore?, or dispute the fact that if you go outside it "can" be dangerous because you "could" get hit by a meteor? No way! So don't try to find that ONE case to try to prove us all wrong here. If our information wasn't acurate and we were wrong, people would be having cases of misdiagnosed BFS turn into ALS and things like that happening, and the fact of the matter is, that just hasn't happened. NO ONE has had BFS "turn into" ALS... No ONE! It can't. It won't, and it never will. Just as no one will have a common headache "turn into" a brain tumor. Common headaches and brain tumors might share one symptom (a headache), just as ALS and BFS share one halfway common symptom of twitching, but when you know the differences betwen ALS and BFS twitches, as well as the charactaristics of the two, you'll know that they are COMPLETELY DIFFERENT, and happen for COMPLETELY different reasons and are in NO WAY related, just like a common headache and a brain tumor.

One last thing. Can there ever be a case of a person who has BFS coming down with ALS? Of course there is, and it WILL happen sooner or later, but NOT because BFS turned into ALS or anything even remotely similar. It'll happen because you CAN have 2 or more things going on with your body all at the same time! Can a person with MS get cancer? Sure. It doesn't mean MS turns INTO cancer! Can someone with diabetes get alsheimer's? Of course! It doesn't mean diebetes turns into that though. Sooner or later SOMEONE with BFS will end up with ALS, and everyone is going to freak out over nothing. I dread for the day that happens, but it will. You just need to be armed with knowledge about this stuff so you won't freak out over it, and that's what this site is here for.
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Re: I've had it with all those contradictions

Postby MarioMangler on October 26th, 2008, 6:15 pm

Amen!
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
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: I've had it with all those contradictions

Postby nervousguy1 on October 26th, 2008, 6:37 pm

Wow, arron.. excellent post!
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: I've had it with all those contradictions

Postby morzani on October 26th, 2008, 7:01 pm

thank you again Arron. You ar always there when we need it
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Re: I've had it with all those contradictions

Postby bktisbury on October 26th, 2008, 7:54 pm

thanks once again .
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Re: I've had it with all those contradictions

Postby steveo on October 26th, 2008, 9:01 pm

Arron wrote:I'm going to have to chime in here because I was asked to. This "study" is about as old as the hills and like many studies, it wasn't performed very well and the statistical outcome was inaccurate to say the least. I feel like I am beating an old horse here because this subject has been covered about a zillion times on this site over the past few years if you just do a search on it. Either way, here is the REAL scoop from someone who really DOES know about it.

First off, quit disuputing what will or won't show up on an EMG for ALS. ALS is a BODY WIDE (upper AND lower) motor neuron disease. By the time you notice a symptom that would prompt you to go see a doctor, it will CERTAINLY show up on an EMG UNLESS your doctor is a complete idiot, is drunk or is in some thrird world country using old, beat-up 1970's equipment.

If you had "twitches" and you went to see a neuro who performed an EMG, if those "twitches" were happening as a result of ALS, they WILL (100% of the time) show up on the EMG, period, end of story. Why is it so definite? Simple, twitches in ALS are a RESULT of the disease ALREADY running its course. Twitches happen BECAUSE of nerves disconnecting from the muscles, NOT as a precurser, so if you have ALS twitches, that disease is WELL into running its course, therefore it WILL show-up on an EMG.

Now lets go beat that old horse with the 6.7% study outcome. The study was done on a given amount of people. They ASKED the patients what THEY noticed first. Not what the doctor found first, but what the patient noticed first, and 6.7% of them said they noticed their twitches first.

What the study didn't say or take into consideration (and what you people don't know yet) is that of those 6.7% people, NONE of them had an EMG until AFTER they went to the doctor! It's like saying you noticed your sore throat before you had the flu. No, you get infected with the flu virus first, then you get a fever and your body reacts by aching and a sore throat. It's your body's defense mechanism fighting the virus that's already infected your system. A sore throat doesn't CAUSE the flu! This is the EXACT same thing with twitches. The twitches (a sore throat) happen becaue the disease is already running its course. What IS the disease anyway? It is a motor neuron disease that affects nerve pathweays which disconnects them from your muscles, rendering those muscles useless from that point-on. ALS is NOT a twitching disease! It's a nerve / muscle disease! Twitching really has nothing to do with it.

Some people may NOTICE a sore throat first, but that doesn't mean a blood test wouldn't have revealed the flu virus running through your system HAD you have gone to the doctor before you FELT that sore throat. "Noticing" twitches and THEN going to see a neuro CERTAINLY DOES NOT mean the disease PRESENTED with twitches first. It simply means 6.7% of the patients noticed their twitches (sore throat) before they realized they had the disease (the flu). It in NO WAY implies or points to the definition that 6.7% of ALS patients won't show a bad EMG if they were already twitching. It simply meant that 6.7% NOTICED they had twitches BEFORE they had their EMG do confirm it. Just like noticing a sore throat before seeing your doctor and having him confirm it's influenza. It doesn't mean influenza wasn't in your system CAUSING your sore thorat already. That study is exactly doing this though and people that don't know get all caught up in the lame and inaccurate 6.7%.

It is a fact that most ALS patients don't even SEE or feel their twitches. They are VERY fine little ripples, NOT big thumpers, bumpers, jumpers, buzzers and here today - gone tomorow twitches that BFS people get. Yes, BFS patients also get hot spots that will twitch for days, weeks and even many months, but again, the twitcvhes are COMPLETELY DIFERENT (I explain this in GREAT DETAIL in my posts "BFS in a Nutshell" and again in "Why You Don't Have ALS"). It is common for ALS patients to have to use a black strobe light to see their twitches because they are so tiny and fine. Again, they are NOT like BFS twitches at all. Not in the way they look, feel or act.

So, that study said 6.7% of the ALS patients PRESENTED with twitches first, and that is correct. That's what THEY noticed, not what the clinical actuality was. The clinical actuality was once they went to the doctor and asked about those twitches, ALL of the patients had dirty EMG's. The entire study was flawed from the beginning, and people like myself and many other veterans on here will COLLECTIVELY and unanimously attest to the inaccuracy of this study. That 6.7% doesn't mean squat! It is a bogus number, just as if I said 6.7% of people suffering from the flu present with a sore throat first. Yeah, well that doesn't mean the influenza virus wasn't already flowing through their system, or that it wouldn't have shown up on a blood test first HAD they have gone to see their doctor. It only means that's what THEY noticed first.

Now, let me explain somethig here about ALS as simply as I can. ALS is a disease that starts and it runs a course, just like a cold or the flu. They all follow a chain of events. There is no mystery behind ALS other than the actual cause. How it runs its course is pretty well documented as is how to diagnose it. It begins by disconnecting pathways of nerves from muscles. AFTER that starts happening the muscle begins to quiver (twitch) in an automatic response to try to fix itself. They call this "a last ditch effort to repair itself". It never does repair itself (and it never will which is why ALS twitches aren't "here today and gone tomorrow". It doesn't come and go!). So, that muscle continues to twitch. As it does this, the disease is slowly spreading from that point-on.

So lets' say it starts in your thumb. You won't notice any twitches UNTIL the nerve pathways have begun to disconnect. Once this takes place, it begins to twitch. In the mean time, the disease is spreading across your hand. By the time you NOTICE those twitches, that thumb has already begun to get weaker. Why? Because your brain can't send information to your thumb anymore to make it function as it did before the disease set-in.

Now, it won't instantly get weak. It'll take a couple of weeks or so for that thumb to become completely useless. Think on a micro scale. You have more than one nerve in your thumb and more than one muscle. If one nerve disconnects, it still has thousands of others connected to numerous muscles that it has to disconnect before that thumb becomes useless. In the mean time, as this is happening, you lose articulation and strength in it. It doesn't happen overnight, nor does it take months and months either.

In the mean time, the twitching will have spread across your hand to the next finger and up into your wrist area. By this time you may say to yourself; "Wow, something is wrong. I can't grab anything with my thumb and finger in this hand anymore.", so you go see the doctor. By this time you may or may not have noticed the twitches. Twitching in ALS is pretty much irrelevant. This is why most neuros don't pay attention to what you are explaining about your twitches when you go see them for the first time. They are concerned about the REAL symptoms..... Weakness, loss of articulation and what the EMG says.

Many people complain about their neuros not listening when they are talking about their twitches, and just like I said, that's because neuro's don't care about your twitches. Twitches are NOT a sign of ALS. Weakness, atrophy and loss of articulation, plus the EMG is what tells the story, so what YOU think is scary isn't what the doctor is concerned about.

So I'll continue. Once the disease begins to run its course, it leaves a wake of destruction in its path. Because you can no longer move that thumb, it doesn't get any exercise so it begins to shribble and shrink (atrophy - wasting or whatever you want to call it).

Now this is where the grey area comes in with ALS. It takes time for this to happen. How much time? Think of it lke this, if you have ever broken a leg or an arm and had it in a cast for 6 weeks, when they remove that cast, that linmb is whiter (because it got no sunshine), and it is MUCH smaller (and weaker) than it was before you broke it. That's what 6 weeks does to a limb, so when ALS sets-in you can figure on this very same thing happening to ANY limb or finger or wherever you are twitching.

In reality, it doesn't take 6 weeks. Your broken limb started shrinking the day it went into that cast and it shrinks at a fairly steady rate from that day until that cast comes back off. So in reality, it would have lost 50% of the amount it shrunk in 6 weeks at the 3 week stage. So really, all it takes is a few weeks for atrophy to show-up once ALS has disconnected the nerves from the muscles. If you have been twitching for a month or more in one spot, that spot WILL show arophy if it was ALS by that time, and you will DEFINATELY have lost articulation in that spot by then. Keep in mind, the twitching is happening because the disease is already underway.

So let's continue. ALS will MIGRATE up through your wrist and across your hand. As this happens, you WON'T be able to pick anything up anymore, hold your cup of coffee or make a closed fist like your other hand. As this happens, it is also migrating its way up your arm. By this time (after a couple of months), that hand is in a relaxed position and it can no longer be used. You KNOW you have ALS by now. There is no doubt. These saye symptoms will begin to happen in othr places on your body. An EMG will show the disease from the instant (actually even before) twitches begin to appear simply because by the time the first micro quiver begins, the disease has taken a hold and is now running its course. It WILl show pops, sharp waves and dirtyness on the EMG.

Now to set something else aside. You do NOT have to have the EMG performed right at the spot of the twitching. This is a misconception a lot of people have. If you have ALS in that hand, you do NOT have to have the EMG needle poked into that hand to see ALS! I don't know how many times we have had to say this on here, and we have even had quotes from several neuros saying the same thing on here. ALS is a BODY WIDE disease. It is not just an upper or lower motor neuron disease. If that were the case, people with ALS would EITHER have loss of muscle control from the waist up, or the waist down, and that isn't the case now is it? It is a system wide disease. It's like saying the flu is a sore throat virus. No, it is running through your whole body, nit just in your tonsils. You do not need to have a blood test IN your tonsils to see that you have the influenza virus! ALS is no different.

Now, are there cases of where one or two people showed a clean EMG and then got diagnosed with ALS later? Sure. Don't people have a lump they get diagnosed as benign and then later-on it was found to actually be cancer? This kind of stuff happens in ALL aspects of the medical area. This is why they say to get a second opinion! Ninety something plus percent of the time, your neuro will be correct. In fact, I can word that even better. Less than 1% of the time they will be inaccurate. Do NOT take that as a literal number, take that as a measurement of scale. In other words, it might be one tenth of one percent. It is all dependant on the circumstances.

As I said in the beginning of this "book" I just wrote here, there are many circumstances that can sway the outcome of your test depending on where you live, who your doctor is and what his equipment and experience is. If you live in Ethiopia or Cuba, you might want to get a second opinion somewhere else, but if you go to Stanford, UCSF, The Mayo Clinic (even though they are the idiots that did that 6.7% study), or ANY really good hospital, your chances of getting an accurate diagnosis is pretty much100%.

So why do doctors say things like "You don't have ALS right now, but come back and see me in 2 or 3 months for another test." ? This is because NO medical doctor on the planet will (or can) tell you you are 100% healthy. You can walk out of his office and drop dead of a stroke or a heart attack. This is called CTA or "Covering Their A*ses". They too want a second opinion for THEM, not for you. If they had any doubt they would IMMEDIATELY schedule for more testing and bring in a few other doctors to double and triple confirm their findings. Trust me, they don't send you home for 2 or 3 months! They can also never say you won't GET ALS. You can go in for a CT or PET scan and not have any cancer in your body, but it doesn't mean you can't get cancer next month, next year or in the next 10 years. ALS is no different. It is all covering their as*es. You just need to be aware of that and not dwell on them saying "You don't have, and/or never will have ALS". NO doctor on the planet will say that.

Just know, it took your neuro almost a decade of studying this stuff to get his degree in neurology. What you learned on the internet (mostly inaccurate information unless you got it from us here), is NOTHING compared to what they know. So what YOU perceive is scary, or as a symptom, CERTAINLY isn't what your neuro perceives as a symptom or what he believes he needs to do to look for this disease. It IS your first day, it ain't their's, so trust them!

Now, please don't try to dispute what I just said here. The #1 thing with BFS is people do all they can to find that ONE word or that ONE person to prove what we say here as wrong. This ain't our first day with this stuff, and trust me, I myself have done more studying on this stuff with more doctors than probably 90% of all neuro's out there ever have. Why? Because BFS is a benign syndrome. I'd be mad if neurologists pulled time away from finding causes and cures for REAL diseases to find out why BFS happens. I on the other hand had a vested interest, not to mention the time and money to devote to it. "I" wanted answers so I went looking.... and found them in many areas over many years. It is the COLLECTIVE information we have here from myself, John, Gary and MANY other's where we have spent YEARS pooling our info and findings on this stuff to give to you free of charge. You won't find that "one" person or "one" case to dispute what we know or say here, so don't waste your time looking. You have better things to be doing anyway.

Think of it like this, People get hit by meteors too you know. There are 2 documented cases where people have actually been hit by meteors. One guy was killed, so are you going to take that "one" case and not go outside anymore?, or dispute the fact that if you go outside it "can" be dangerous because you "could" get hit by a meteor? No way! So don't try to find that ONE case to try to prove us all wrong here. If our information wasn't acurate and we were wrong, people would be having cases of misdiagnosed BFS turn into ALS and things like that happening, and the fact of the matter is, that just hasn't happened. NO ONE has had BFS "turn into" ALS... No ONE! It can't. It won't, and it never will. Just as no one will have a common headache "turn into" a brain tumor. Common headaches and brain tumors might share one symptom (a headache), just as ALS and BFS share one halfway common symptom of twitching, but when you know the differences betwen ALS and BFS twitches, as well as the charactaristics of the two, you'll know that they are COMPLETELY DIFFERENT, and happen for COMPLETELY different reasons and are in NO WAY related, just like a common headache and a brain tumor.

One last thing. Can there ever be a case of a person who has BFS coming down with ALS? Of course there is, and it WILL happen sooner or later, but NOT because BFS turned into ALS or anything even remotely similar. It'll happen because you CAN have 2 or more things going on with your body all at the same time! Can a person with MS get cancer? Sure. It doesn't mean MS turns INTO cancer! Can someone with diabetes get alsheimer's? Of course! It doesn't mean diebetes turns into that though. Sooner or later SOMEONE with BFS will end up with ALS, and everyone is going to freak out over nothing. I dread for the day that happens, but it will. You just need to be armed with knowledge about this stuff so you won't freak out over it, and that's what this site is here for.


Excellent info.

Could you do another one as to why we don't have MS either please :)

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Re: I've had it with all those contradictions

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