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Why You Don't Have ALS (part 2)

PostPosted: May 29th, 2008, 10:13 pm
by Arron
Here is a continuation:

Re: where did I see this?

Oh god yeah, "buzzing" or "vibrating" is a common BFS symptom that a lot of people get. The pins and needles are referred as peripheral neuropathy (PN), and a lot of people with BFS experience that too, although it may or may not have anything to do with BFS. Either way, even without being related to BFS, PN is usually a benign thing. Again, a LOT of people experience pins and needles though.

As far as any time frames go, there are none. The course your BFS has taken is about as par for the course as you can get though. It may or may not ever completely go away. I have seen one or two people say their BFS went away for good, but you just never know. I do know a LOT of people say "X" made their BFS symptoms go away, and then 2 or 3 weeks later, they are right back on the site again with the symptoms all over again.

There is no "cure" other than forgetting about it and not letting it bother you anymore. Once you do that and you don't dwell on the symptoms anymore, you'll notice that they are far and few between, and when they do come-on stronger, you just don't care about them because you KNOW it isn't anything that is going to do any harm.

Hope that helped. Have a good one!

Re: another shaky mind looking for a bit of solace

Hi XXX, when BFS first sets in, it is at its worst. It’s like your whole body is affected. With that, these new sensations bring doubt and fear so you constantly test your self and strength. This adds to the problem. You don't think much of tensing a few muscles while testing, but do that 20 times a day and it is like walking up a flight of stairs. The next day you are sore and fatigued, so your self testing doesn't do as well and you usually end up with more pain and perceived weakness than you normally would have. This fuels the cycle of fear and instils more doubt, which causes more anxiety, which feeds the BFS symptoms even more.

ALS is usually painless. You don't usually "feel" or see the twitches. With that, the twitches are a direct result of muscle tissue already in peril, so the disease has already taken a good hold and is well on its course by the time you notice the fine little twitches with ALS. Often you need to use a special strobe black light to see ALS twitches because they are so fine.

BFS is very strange. Some people it hits like a ton of bricks and others it is very mild. Your case sounds just like how mine came-on. One big twitch, and once the stress of learning about ALS... a whole explosion of twitches, cramps, pains, jolts, vibrations, fatigue, weak and drained feelings, etc. for several weeks and even months until you realize that it "most likely" isn't ALS. Once you do that, it subsides quite a bit. You'll still have doubts, which is why I said "most likely". BFS won't be "cured" until you fully KNOW (and believe) it isn't ALS. Once you do that, it goes away by 95%!

Stress and anxiety feed BFS. Chemicals get released in your body that amplify the feelings, weakness and twitching. It is only normal. You said you do construction. Be up on a roof doing some construction and take a near fall.... the realization of knowing you could have just fallen and broken your neck releases natural chemicals that make your heartrace, your knees weak, make you tremble and cause you to be scared. It is a natural process that fear causes. That same process of fear (thinking you have ALS) feeds BFS like gas to a fire. It doesn't seem normal or likely to you because you haven't done anything physical to make you feel like that. Now add self strength testing all day and it compounds the stress and fatigue and makes you feel weaker and more tired, plus it causes some cramping from time to time. All of this combined puts you exactly in the situation and mind set you are in right now.

Your EMG test will probably be just fine. Once that happens, KNOW that it is not any possible way for it to be ALS. An EMG is the ultimate rule out, and remember.... twitches are a SECONDARY action of ALS already in progress!! With that, if it was ALS, there is no doubt it will show up on the EMG. When it doesn't, do not doubt the results! Everyone always does, but trust me, NO ONE diagnosed with BFS has gone on to develop ALS. NO ONE! The key to the "cure" is to FULLY realize that BFS is BENIGN and is in no way associated with a neuro muscular disease.

Hang in there. The EMG results will help put your mind at ease.

Have a good one!

Re: another shaky mind looking for a bit of solace II

Yes, you have it right. ALS usually starts in one small place (say a thumb) and it migrates from there to other fingers, then the wrist, then the forearm, bicep, shoulder, and so on. It leaves a wake of dead, unusable muscle behind that quickly (within a couple of weeks) wastes away & shrivles-up because they can no longer receive signals for use, thus losing any and all exercise to keep those muscles toned.

Ever have a broken arm or leg that was in a cast for 5 or 6 weeks? In a little more than 1 month's time, that limb (even though the muscles are still alive), wastes away and becomes SUPER weak. It is simply because it wasn't in use very much while in the cast. ALS is that times 10 because there is ZERO use of that muscle, so it wastes away fairly quickly and it NEVER comes back.

There is no wishy-washy ness about ALS. It sets in, takes hold and starts running its course, leaving nothing but unusable fingers, limbs & muscles behind in its wake. It is NEVER random. It NEVER has random pops, jolts, weakness or anything of the sort. It is PERMANENT. Once you feel weak in one spot, it won't feel better in 2, 5 or 8 days later like BFS symptoms do.

Your EMG results will set your mind at ease.

Have a good one,

Re: Wide Spread Twitching and Pain

I have talked with people that have had it (BFS) completely go away, but not too many. Most people (like myself) have it go away by about 95%. With that, it isn't any more bothersome than any other normal body quirk we all get as human beings. No one ever said we would always be pain free, disease free, dirreah free, stomach issues free, headache free, stress free, debt free, etc.

There is more pain worrying about this stuff than there is in actual "pain" or inconvenience that it causes in our lives. No twitch ever stopped anyone from doing anything they wanted to do. Occasional pain due to BFS related cramps don't feel great, but I'd rather have that than migraines like a LOT of people have with no medical reason for them happening.

My back pain from being old sucks. My eye sight from getting old sucks. I just try not to let that kind of stuff get to me. You have to do the same thing with BFS. It is a bummer to have it, but it isn't THAT bad once you overcome your fears about ALS. Once you do that... you have the "cure".

The most dehabilitating thing with BFS is the fear of ALS. It causes depression, anxiety, loss of work, loss of family participation, loss of happiness and so on. No twitch on the planet has ever caused any of that. It is all because of fear itself… fear YOU cause on your own. Overcome that fear by educating yourself on BFS as much as possible and you'll lose that fear and WILL be cured. Cured to the point that BFS is no more bothersome than anything else that happens in our daily lives.

I hate work traffic but occasionally I drive in it because I have to if I want to get to where I am going. I try not to let it bother me, but it is still there and has to be dealt with. At least BFS goes away 95% or so once you get rid of your fears. We’ll never get rid of work traffic. I think I’d rather have BFS than deal with all the idiots that drive in work traffic everyday.

When you are scared and anxious, you tense-up. That in itself causes pain, weakness, fatigue and lack of happiness. Look what a stress headache can do to you? They are very painfull and you didn’t even feel your neck muscles tensed up all day, but as a result, even a couple of extra strength Tylenol won’t make the pain go away sometimes because the pain is so bad. You think tensing any other muscles all day won’t do the same thing? Of course it will. You don’t have to NOTICE that you are tensed up to create pain after a few hours. Lose the fear and you'll lose the majority of the BFS symptoms. It doesn't happen overnight, but it WILL happen, just like working out. You can work out for a whole week or two and not see any muscle changes. Oh, you are going to ache like you can’t believe and feel weak and everything else the first few days, but you won’t be any stronger or have any bigger muscles until you keep with it for a few months. Think BFS is any different? Nope. The time frame of changes are about the same. It takes time.

I see you are a photo guy. You might have days where you feel like you can't even hold your camera up. Your arm or hand might start shaking. When this happens, just go take a break for a while. Kick back and RELAX and it WILL go away. It may be an hour or it may be the next day. Is that inconvenient? Sure it is. And it’s even worse if you are dealing with a client at that time, but it ain't any worse than having a bout of the scoots from eating something that didn't agree with you from time to time. You'd have to take the same break or maybe even cancel the shoot if you had stomach cramps or the scoots. It's just one of those things we have to deal with every so often.... so is BFS so don’t treat it any differently.

Once you are "cured", those bouts of shaking, trembling, cramps, etc, become far and few between. I still get them once every couple of months myself, but you KNOW what it is, and you just deal with it. It goes away after a while and you forget about it most of the time.

Have a good one!

Re: Remember me? I'm a recovery story :)

Freaking AWESOME! I still get hot spots too from time to time. The "cure" is the knowledge that allows you to KNOW it is nothing and to just ignore it. I can honestly say you my friend are CURED of BFS!

Will it ever stop? I can answer that with a question; Does it really even matter if you KNOW it is benign anyway? It's like worrying about a headache being a brain tumor. We all have spells throughout our lives with added stress that brings on headaches we don't normally get. If you KNOW it is not a brain tumor, then does it really mater that we get a headache spell from time to time? No, not at all. BFS is exactly the same and you have freed yourself from the hell of continual anxiety over something that is absolutely harmless. Cheers to you my friend!

Re: Help Really scared!!

Internal shakes are common with BFS. You can feel it but you can't see it. It is also common to actually have shakes, tremors, jolts, bumps, thumps, little twitches, big twitches, fatigue, aches, pains, weak "feelings", rubbery leg feelings, a "drained" feeling with lack of energy (fatigue), etc. with BFS.

Are you taking any meds to help calm down your nerves? You would be very surprised at what anxiety can make your body do, even when you don't really feel anxious or are in a panic mode.

I am not a doctor so I can't tell you what to take or what not to take. All I can tell you is MY experience, and what other people convey for what works for them. Ativan (Lorazepam) is a benzo med. It calms you down and actually has anti convulsive properties. Most people take 1mg. doses to help calm their symptoms. Xanax and Klonopin are also commonly used. They are basically like the old Valium everyone used to take, but they get into your system in about 20 minutes or so, and stay for about 4 hours, rather than taking an hour to get into your system and lasting 18 hours like Valium is notorious for. You don't feel like a zombie the next day like Valium makes you do.

Anyway, as I said, I can't give you any medical advice or tell you what to take. All I can do is tell you what works for people with BFS so you can ask your doctor what he thinks. Maybe he can let you try a couple of 1mg pills of Ativan and see what it does for you. At the worst case scenario, it'll help calm your nerves and keep your anxiety / fear level down.

I have had internal tremors many, many times over the years. They come and go. One time in Las Vegas (where you'd think you'd be too busy to notice them), I had them all week and I was eating Ativan every 4 hours, round the clock to help calm that feeling down. It's like this internal pulsing that just won't stop. I know what you are feeling! Ativan (and Xanax, Klonopin) also helps get rid of that pit in your stomach from fearing what you might or might not have. Even people that KNOW their test results pointed far away from anything serous still have fears that won't go away. That is VERY common with BFS. Reality seems to go out the window. The "doubting" is what gets you. Do NOT doubt your doctor or test results! ALS and other serious neuro diseases don't have internal shaking as a symptom.

You asked about MS. I have had 2 relatives get MS. My wife's sister has the really bad kind. The kind that continually progresses, like what Richard Pryor had, which is only 15% of the cases. The other 85% of MS cases are the non progressive kind that have symptoms that come and go but are usually very mild. If you looked up MS symptoms (Don't do it though!!!), you'd think the whole world had it! Every symptoms is what every person describes they have had at some time or another in their lives, even BEFORE they had BFS! The list of symptoms is very vague and it crosses over too much.

I would call your doctor first thing in the morning and ask for a prescription of some sort of benzo med to help calm your nerves. In return, that'll also help calm some of your symptoms too. Ativan works really well for me. Xanax works really well for other people. See what he says and I think you'll feel better about a half hour after you have taken your first dose. The main thing is to not dwell on what it "could" be. That is like dwelling on heart attacks every time you feel a minor chest pain, or dwelling on brain tumors every time you have a simple head ache. Not all odd symptoms are a sign of anything serious!! Just remember that!

Look at all of the tens of thousands of people that have posted on the BFS site that ALL thought they had something really serious because of their odd symptoms, when all they had was BFS.

Hang in there and try to keep occupied to keep your mind off of it until you see your doctor again for some meds.

Take care!

Re: In need of Tough Love :)

Happy Easter. What you have described is completely in line with BFS and nothing at all like ALS. True fasciculations are what ALS victims have and those are VERY fine little ripples that you cannot feel, and sometimes can't even see with the naked eye. Doctors sometimes have to use a black light strobe to "stop action" on the skin so you can see the movements. BFS patients rarely have true fasciculations at all. This is why when they are getting EMG's and they are getting probed right in the limb that is twitching, it doesn't show up as "electrically fired" nerves like ALS patients have.

You hit the nail right on the head with BFS when you said "they go away when I pay attention to them". With BFS twitches you can usually make the twitch go away by flexing the muscle that is twitching. I KNOW you are going to test yourself on this, so be forewarned.... if you have a twitch on your shoulder or in your arm and you flex it, it MAY not go away 100% of the time. This is because the muscle that is actually twitching might not be in the group that you flexed. Just because you flex your arm doesn't mean you are flexing ALL of the muscles in that arm.

If someone is under your bed kicking upward, you are going to see the bed move and you are going to feel it. It is only one small spot underneath that bed that is causing the whole thing to move. If a muscle deep inside your arm, leg, torso, etc. is twitching, the upper muscles will also feel it and you will be able to see it. It doesn’t mean those exact muscles are the one’s twitching. I get this all of the time when my fingers twitch. It isn’t really my finger twitching. The twitch is in my forearm and it is causing the tendons in my arm to move, which in turn moves my finger. If I flex my finger, it still twitches. This is why this test isn’t very accurate. In fact, it is a pretty INaccurate test to do, but some people still do it anyway.

ALS twitches start in ONE place and migrate from that place on. Like getting a novocaine shot in your mouth when you go to the dentist. First the area where the needle went in gets numb. After a few minutes, your gums begin to get numb. By the time you walk out of there your nose, cheek and even up to your temple is numb. ALS doesn't work that fast, it would take weeks or more for it to migrate like that, but it does migrate in that fashion. You won't have one spot twitching, then another on the other side of your body, then another someplace else at random with ALS, just like you won’t get numb where you got your shot, then your foot goes numb, then your left hand, then your cheek, etc. It starts in a spot and migrates just like that novocaine does. It is SO hard for people with BFS to understand this though, and SO hard for them to BELIEVE it. They want to protest and do everything they can to DISprove what EVERY expert tells them, no matter how irrational it sounds. They still disbelieve the facts.

Again, the biggest factor with BFS is the fear itself, and the complete irrationality of not believing anyone that tells you you’re OK, even after a clean EMG, they will still protest the diagnosis. It's like whatever chemical that is firing off the twitches reacts in our brains to wall off rationality. The "cure" to BFS is getting past that fear and doubts, and convincing yourself that what you have is benign and isn’t going to hurt you. The constant doubting is the hell of BFS. Once you get past that, in time, the twitches will go away by so much, you won't notice them from day to day anymore. It is more like week to week, and each time you twitch, you just laugh at it and wonder why you were SO off the deep end and couldn't understand WHY you were so scared over something that CLEARLY has nothing to do with any neuromuscular disease. It is SO obvious once you come to grips with your fears.

You are pregnant, so your body is naturally under stress. Even if everything was just peachy in your life, it wouldn't matter, you would still have flare ups of twitching. Most pregnant ladies with BFS experience this. ANY stress on your body or mind will cause flare ups. As you get "cured" of this syndrome by convincing yourself that you are OK, it takes more and more stress levels to bring back twitches. Right now as you are in your early stages, pretty much any stress or anxiety will cause twitches. You will also probably experience shakes, tremors, pains, cramps, fatigue, "drained feelings", rubbery legs, bumps, thumps, jolts, buzzing, tingling, hot flashes, cold chills and every kind of twitch you can possibly imagine. The KEY is KNOWING this is NORMAL for BFS and is completely OUT of the normality for ALS, or any other neuro disease. They just don't work that way, but BFS certainly does.

I am not saying you WILL have ALL of those symptoms. You may only have one or two of those, but you COULD have all of those at one time or another. Trust me, in my early stages, I had all of those symptoms at the same time! I was a complete mess! My doctor put me on Paxil which amplified every symptom and turned me into a literal slurring zombie that stumbled over his own 2 feet when I walked! If you want to take any kind of meds, I would ask your doc first about possibly taking a 1/2 mg of Ativan as needed. It will probably affect you baby though so you might have to "ride it out" until you give birth. After that, have at it 

In the mean time, just KNOW that you do NOT have ALS or anything of the sort. NOTHING you described even REMOTELY resembles anything even close to ALS, not even a hint! A twitch is a twitch is a twitch. That is NOT true at all! Twitches from ALS are not the same as the vast variety of twitches you get with BFS. And you might even get a couple of "true fasciculations" with BFS. Some people do get those along with their other random twitches, but that CERTAINLY doesn't mean it has anything to do with ALS. Again, ALS starts in one place and migrates from that area on, leaving nothing but dead, unusable, wasted muscle in its path. It NEVER gets better or goes away, and there is a HUGE difference between "feeling" weak and true clinical weakness. Just because you "feel" weak doesn't mean you ARE weak by any stretch of the means.

If you are weak one day and 3 days later it is gone, that is NOT "clinical weakness". When you lose articulation, control and muscle mass, you will have "clinical weakness". Clinical weakness does NOT come and go. You will never get that because you have BFS not ALS.

No one, not even ONE person with BFS has EVER gone on to developing ALS or any sort of neuromuscular disease. Just remember that! BFS does NOT turn into anything more sinister, so once you have BFS symptoms, rest assured it will NOT "turn into" ALS or anything like that at all.

The "cure" for BFS is not dwelling on it and to stop testing yourself, and to stop wondering "what if"? Screw "what if"!! There is no "what if" with BFS because out of hundreds of thousands with it, no one has shown us there even is a side to "what if" to be concerned about.

Go enjoy the day. Be with family or friends and do anything you can to take your mind off of it. It WILL get better. Not overnight, or over a week, or a month's worth of time, but it WILL get better and go away to the point that it is no more a nuisance than having a pimple on your face. Just because you get a red pimple doesn't mean it is that rare form of drug resistant Staph infection starting.

Have a good one!

Re: Information

If you search your body, you WILL find all sorts of oddities, dimples, dents, creases, etc. that you never noticed before. No one's body is symmetric on both sides. In fact, most people have quite a bit of difference between one side and the other. For instance, my left calf is quite a bit larger than my right even though I am right handed / right legged. You'd think logically that my right calf would be bigger and more muscular because that is my strong side, but it is quite the opposite. Probably because my left side has to work harder to keep up with the right side, so I work those muscles harder which makes them bigger. Either way, I never noticed this until I started twitching. You want to know why? Because I never looked before I started twitching! I never had a reason to bother looking before I started twitching and freaking out. When you do look, you WILL find something and your mind will play all kinds of stupid tricks on you, just like yours is doing right now.

Yes, if you have atrophy you will most certainly have twitches in that spot. Remember... twitches are the reaction of dying and disconnecting nerve endings. They are not the cause, but the symptom of disease already in progress. The process has to have already been in place for some time to make those muscles useless long enough to cause the muscle to waste away. If you are still strong in that area and you have no constant twitches, then it certainly isn't anything bad.

Look at someone with a cast on their arm or leg. It is on there for 6 to 8 weeks. When they take it off, their arm or leg is smaller, whiter, and weaker than the one that wasn't in the cast. This is because you can't use the muscles in that limb while you are in that cast, so after a few weeks it starts to shrivle up, lose its tan and become weaker. This is exactly the cycle ALS takes and about the length of time. The difference is 2 fold with ALS. 1) With BFS you can still use those weaker muscles and they will get bigger and stronger again, and 2) In ALS you WILL have twitching (true fasciculations) in the direct area that the muscle is wasting away BEFORE it begins to waste away, as well as DURING its wasting process. There are no ifs, ands, or buts about it. ALS twitches happen because the disease is already running its course and the muscle won’t come back. BFS twitches happen for no apparent reason and if you exercise, they will grow and you will get stronger.

ALS is a complex disease with simple symptoms and a common course. You contract it. Nerves begin to disconnect from the pathway to your brain someplace in your body. During this course, that area will start twitching as soon as the nerves begin to disconnect. After that, muscle begins to waste because they can no longer be commanded to work by the brain. You get weak in that spot because you have no command control over those muscles anymore and it migrates from there and spreads out across your body until you no longer have control over any muscles in your body. It leaves a path of destruction behind as it migrates up limbs, across your torso and so on. The muscles that can’t be used shrink and NEVER get better.

ALS does not start in one place and then jump to another. It does not get better then worse, or worse then better. It is not here this week and gone next week. It is not temporary. It does not usually have pain. It is hard to feel pain when there is no nerve pathway linking that muscle to your brain to relay any feeling or pain. It does not have thumper twitches that come and go. It does not start in your foot, then jump over to your shoulder, then down to your other foot and then go away and come back someplace else a week or two later.

What you describe, with no twitching in that spot and no weakness is about as opposite from ALS as you can get. I would HIGHY suggest you STOP searching for something you do not have and find a more productive thing to do with your time, especially when you KNOW this stuff can play mind games on you. Right now you are wasting part of your life time away over something that does not exist. Is that really what you want to do with your time? Do whatever you can to get your mind off it and try to move on. Get with some friends. Go to the park. Go out to dinner with a friend or two. Have a few drinks with an old friend. Go mow the lawn or wash the car, but no matter what, do NOT keep searching for things on your body to reconfirm you don't have ALS because all you'll do is find something to cause doubt and you'll be right back here again.

I hope that helped,

Re: Questions

Hi XXXX. Here are the answers to your questions.

Q) Do you know if thigh twitches are proof for ALS? I read this on wikepedia.

A) That is SOOO far off base, it isn't even in the ball park!! Who ever wrote that for Wiki-idiota has NO clue what ALS or BFS is, nor the differences between the two. The only proof of ALS is an EMG and an array of accompanying symptoms. Without the conclusive EMG or accompanying symptoms, it ain't ALS. Just so you know, you CAN have a dirty EMG and NOT have ALS. You have to have the whole enchilada to be diagnosed with ALS. Some people with slight malfunctions in their spinal cord or nervous systems do have slightly dirty EMGs and NEVER get ALS or any other NMD's. Just like some computers seem to glitch more than other's. It doesn't mean it has a virus or anything bad wrong with it. It just glitches sometimes. Just like some people get migraines or general aches and pains. It doesn't mean they have a brain tumor or a broken bone to have either of those symptoms.

Q) I had a clean EMG & neuro exam after 4 weeks of twitching. Is this enough or do I have to go back for follow up?

A) Twitching with ALS is a SECONDARY symptom. It is not a primary symptom, therefore if you were twitching as a result of ALS, then the disease is well into running its course. ALS twitches show up as a result of disease already in progress, so if that were the case, it would definitely show up on an EMG at 4 weeks, let alone the first day.

The first day you have twitches from ALS, it means the disease has already taken hold weeks before, and is IN FULL PROGRESS, running its course, and has been for a while now. The twitching found in ALS patients is a result of disconnecting nerve pathways. That means the pathways have already begun to disconnect, which means the disease is in full swing. There is no "fine line" or grey areas like some people want you to believe. It is like saying bleeding causes cuts and abrasions. No... you get a cut or an abrasion and THEN you bleed. Bleeding is a result of torn skin and tissue. Bleeding doesn't CAUSE your skin or tissue to tear or get cut. It is exactly the same with ALS. The only reason there are grey areas in ALS is because some rookie people on this web site who are not educated in ALS or BFS want to spew out damaging "opinions" that people take as facts, when in fact, they are 99% of the time misinterpreting what a study said, or what their doctor said, or they read some bogus info someplace, like what you unfortunately read in Wiki-idiota.

Q) Is there a possibility that the EMG hasn't shown 'bad signs'?

A) Pretty much absolutely not. Not unless the doctor was sleeping when he performed the test. Contrary to what people want to believe, you do NOT have to get poked in the limb that is twitching to show the results. That is like saying when you have the flu, you have to have blood drawn from your tonsils to show the flu virus because that's where it settles. No... it is all through your blood stream, not just in your tonsils. ALS is a "disease". Once you have it, it is in your system. Just because it hasn't migrated through your whole body doesn't mean it won't show up in a place where you aren't twitching yet. Again, a LOT of misinformation told my some people on this site which is a dis-service to many people in need of TRUE and ACCURATE information. I tried covering all of this in my "BFS in a Nutshell" which should be found at the top of most topic threads. Picture it like this, if you have Melanoma, and it has taken hold INSIDE your body, do you need to find the actual mole where the melanoma began to diagnose it? No, because it is already in your system and is running its course, spreading all over. It WILL show up in blood tests. ALS isn’t IN your blood but is IS in your nervous system. Think of ALS as a highway….When doctors test the nerve pathways, they are looking up and down the main highways and small side streets. If you have a “road block” in that highway, it is going to affect “traffic” on many side streets and on the main highway. You don’t have to look far to find which direction the road block is in.

Q) When do people with fasciculations related to ALS get weakness? Months after twitches started? 6 months? More?

A) After you have been infected with the flu virus, how long does it take for your body to ache or your tonsils to inflame? Everyone is different. There are no exact time tables, BUT... there are AVERAGE times that it takes. With ALS, you don't just get weakness, you also get muscle wasting and no "command control" of that muscle anymore. Twitching doesn’t start until AFTER this has begun. You get weak because the nerves have become disconnected from the brain, and because the muscle can no longer be commanded to flex, it sits idle and becomes weak and it shribbles up. It is no different than someone being in a cast with a broken arm for 6 weeks. When they get their cast taken off their arm is MUCH smaller than the other simply because they couldn't flex or use those muscles anymore. It does not take months, It only takes a few weeks for this "atrophy" to show up. And that is exactly what that is when you come out of a cast with a shribbled up limb... atrophy (wasted muscle mass). Again, just think of a cast getting removed and how much smaller and weaker that arm is when it comes out of the cast. ALS takes the same course, and the muscle shribbles in approximately the same amount of time once the nerves have disconnected. ALS is not a magic disease that causes muscles to shrink. The shrinkage simply happens because that muscle can no longer be commanded to move. O movement = no exercise. No exercise or use = muscle shrinkage.

Believe it or not, it isn't rocket science when you take a few steps back and look at the facts. The problem is, many people on here get freaked out and LOOK for every single reason to dispute what we "BFS experts" are trying to tell them. It is all just part of the course for BFS. Once you get past that and you realize it is NOT ALS, you begin to calm down, come to reason and the twitches and symptoms slowly subside. THAT is the "cure" for BFS.

ALS becomes obvious after a few weeks or so because you realize you can't hold a coffee cup or your toothbrush anymore. In fact, you’ll notice you can’t bring your arm up to brush your teeth or drink your coffee. This isn't due to weakness at that point. It is merely due to no more command control of those muscles to do the task your brain is telling them to do. No use = no exercise = shrinkage and wasting. It's really that simple. Unfortunately, people with BFS look for muscle wasting BEFORE it would show up in ALS. In other words, muscle wasting is the last sign AFTER you have lost control of those muscles. They waste away BECAUSE you can’t use them, not the other way around.

Try not to worry. If you had a clean EMG and you already had twitches present, it is NOT ALS, PERIOD! The worst thing you can do is to doubt or second guess your doctor or the EMG results. Again though, doing that is all part of the course that BFS takes. The fear is SO great, and you are SO sure YOU are right and everyone else is wrong, you just won't listen to reason or to hard facts that are staring you right in the face.

Trust me, there will be people that will dispute what I am saying. I am also willing to bet though, the TRUE experts on this site will NOT dispute what I am saying. There are a few other BFS experts on here that have been around this stuff almost as long as I have, way back when we started this site many years ago, and we all have done quite a bit of studying and research on this stuff. I have talked with literally thousands of people on the site and have taken all that info and applied it into the knowledge we have today.

Re: questions atrophy

ALS doesn't work symmetrically across the body. It migrates and spreads. With that, atrophy won't be even across your body, so both forearms (or biceps) wouldn't measure the same because they won't shrink the same or be attacked by ALS in the exact way at the exact same time.

No one has limbs that are equal anyway. Pretty much everyone has a "strong side". With that, not all strong sides are the larger side. Sometimes the weak side will be larger because you have to work that side harder to do the same task as the strong side (such as carrying something heavy).

A "strong side" doesn't mean "strength". It is more about coordination. It takes more effort to make your weak side function the same as your strong side, because it is less coordinated. It doesn't mean it is always "weaker".

When you have BFS and you go looking for little signs to prove or disprove ALS, you WILL find them, even though they don't exist. You need to quit LOOKING for symptoms. When you have ALS, there is no question. You'll KNOW it! This is especially true if you have been twitching for a while because the twitching is a reaction of the disease already running its course. This means it was present and already doing its thing BEFORE you ever noticed your first twitch. Now compound the time you have been twitching and with no DEFINATE and OBVIOUS symptoms, you don't have ALS. This doesn't even get into the fact that BFS twitches are completely different than ALS twitches in size, frequency, location and type.

With atrophy comes weakness. Not the "here today, gone tomorrow" kind of weakness, but REAL weakness that gets worse, and worse and worse, each and every day. ALS twitches stay in that affected area. You don’t get wide spread bumps, thumps, buzzing, jolts, tingling, etc. with ALS. It starts in a place, attacks that place, causes twitches (that usually can't be seen or felt), and atrophy in that place, and then it spreads from that place forward, until that place and all surrounding areas have been shribbled-up and rendered completely useless. The atrophy comes as a RESULT of the loss of use of the muscles. Not the other way around.

Look at someone that broke their arm. They get a cast for 6 - 8 weeks. When they get the cast taken off, their arm is much smaller and much weaker than the other. It isn't a slight difference, it is a BIG difference. This is because the muscles in that arm couldn't be used while the cast was on so they shribbled up. It doesn't take long to see REAL signs. 6 weeks and you’ll see MAJOR differences in size between the limbs.

ALS does this same thing. It renders muscles useless by brain commands. You'll look at your fingers (or arms, etc.) and think of holding a cup, but your fingers do not move. Because they can't move by receiving brain commands, they don't get exercised anymore so they shribble up.

ALS is everything about the disconnection of communication lines between the brain and the muscles and not much about muscles shribbling up or twitching. All of that comes as a secondary symptom from the result of disconnected command connections from the brain. It is a disease of the nerve pathways, not of the muscles. The muscles only show the results of not being able to be used anymore. For some reason people with BFS (in the early stages where rationality seems to go out the window), people only associate twitching with ALS, when twitching isn't even a major sign of ALS. Some ALS patients don't even notice the twitches, and it is common for them to be so small that you can only see them with a special strobe black light to "stop frame" the movement so they can be seen by the naked eye.

Big thumpers, jolts, jumps, random twitches that are in one spot now, then in another later, then someplace else a while after that are NOT even close to being what ALS twitches are.

I explain all of this in my "BFS in a Nutshell" posts at the top of most threads. If you haven't read that, you need to.

What you described, and the way you are looking for these particular symptoms have nothing even remotely to do with ALS.

Re: Why You Don't Have ALS (part 2)

PostPosted: May 30th, 2008, 2:20 am
by Frederick

I read here that BFS twitches do not show up in EMG, I HAD TWITCHES SHOWED UP in the EMG - so I got ALS ????

Re: Why You Don't Have ALS (part 2)

PostPosted: May 30th, 2008, 11:20 am
by Arron
You didn't read what I was saying all the way, or maybe I worded it wrong.

ALL BFS'ers have random twitching. Some people do have true fasciculations though. They may or may not be related to, or caused from BFS. Even people who do not have BFS get true fasciculations from time to time, especially around their eyes and fingers. It is NORMAL to twitch without having BFS. EVERYBODY twitches here and there.

What I was saying though is the reason twitches don't show up on the EMG is because they are not true fasciculations. Only true fasciculations show up because they are electrically fired. The vast majority of BFS twitches are big thumpers, jumpers, jolts and twitches that you can see move limbs, fingers, etc. Those kinds of twitches are not true fasciculations, and those also are not the kind of twitches you get when you have ALS. ALS does not have random type BFS twitches.

Just because you have some true fasciculations does NOT mean you have ALS what so ever.

Most people, when they get their EMG and are twitching during the EMG do not have their twitches show up. This is because those twitches were NOT true fasciculations. If you were twitching and they DID show up on the EMG, it STILL does NOT mean you have ALS. The EMG needs to show conductivity probloems, and be "dirty" or "abnormal". If they are normal twitches showing up, then all it means is you are having some normal, true fasciculations at that time.

You have to consider.... Isn't the doctor standing right there watching the EMG??? Doesn't he know what he is looking for? The answer to those is YES! Did your doctor tell you you had a bad EMG? No.

If it was a bad EMG, then it was a bad EMG and the doctor would have said you had an abnormal EMG and you need more tests. If it was a clean EMG, ESPECIALLY when you had twitches showing up DURING that EMG, it is as proof positive you do NOT have anything like ALS going on BECAUSE he is looking right at them and can CLEARLY see that they are normal. He saw NORMAL functioning fasciculations which fire for different reasons and show up differently than abnormal one's such as what you see in patients with ALS.

So the answer to your question Frederick is NO, you do not have ALS what so ever, even if your twitches showed up on the EMG. SOME people do have true fasciculations, but most with BFS do not, just as some women get cramps during PMS and other's do not. It doesn't mean anything bad. Not everyone is the same.

Re: Why You Don't Have ALS (part 2)

PostPosted: October 24th, 2008, 1:29 am
by MarioMangler
Bumping another important post from Aaron. The facts are all here if you choose to accept them.

Re: Why You Don't Have ALS (part 2)

PostPosted: October 24th, 2008, 1:59 am
by Chris_uk
Its the last bit that scares me, the rate my calfs go, if i do get an emg there is no way when the needle is stuck in that they wont see facs...the just jave to its jumping and twitching close to 100 times a minute.

Re: Why You Don't Have ALS (part 2)

PostPosted: October 24th, 2008, 2:32 am
by MarioMangler
The question is... are those even true fasciculations? I would bet that a lot less of us have "true" fascics than we think.

Re: Why You Don't Have ALS (part 2)

PostPosted: October 24th, 2008, 2:34 am
by nervousguy1
MarioMangler wrote:The question is... are those even true fasciculations? I would bet that a lot less of us have "true" fascics than we think.

Where can i find part 1? interesting post :)

Re: Why You Don't Have ALS (part 2)

PostPosted: October 24th, 2008, 2:36 am
by MarioMangler
For some reason part 1 showed up under a different category. I bumped it, but I think it went under "General Topics" instead of questions. Just look around, it should be easy to find.

Re: Why You Don't Have ALS (part 2)

PostPosted: October 27th, 2008, 9:18 am
by nervousguy1

Re: Why You Don't Have ALS (part 2)

PostPosted: October 7th, 2009, 11:11 am
by nervousguy1
Bump for the people who havent read this excellent post yet.

Re: Why You Don't Have ALS (part 2)

PostPosted: July 22nd, 2011, 11:32 am
by MarioMangler
Bumping this old thread that I am surprised has never been stickied before.

Re: Why You Don't Have ALS (part 2)

PostPosted: July 22nd, 2011, 11:14 pm
by garym
MarioMangler wrote:Bumping this old thread that I am surprised has never been stickied before.

Good point...these need to be sticky.

Take care,

Re: Why You Don't Have ALS (part 2)

PostPosted: July 22nd, 2011, 11:34 pm
by Wells05
Aaron, you are amazing! Where did u get all of this great information? Thank u a ton for this post!

Re: Why You Don't Have ALS (part 2)

PostPosted: July 22nd, 2011, 11:37 pm
by MarioMangler
Arron knows more about BFS than most doctors do. Neuros actually come to him for answers every once in a while. You would be hard pressed to find anyone who is more familiar with BFS than he is.

Re: Why You Don't Have ALS (part 2)

PostPosted: July 22nd, 2011, 11:47 pm
by Wells05
MarioMangler wrote:Arron knows more about BFS than most doctors do. Neuros actually come to him for answers every once in a while. You would be hard pressed to find anyone who is more familiar with BFS than he is.

Gosh this is great! Thank you for letting me know, very comforting ?