Why You Don't Have ALS (part 1)

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Why You Don't Have ALS (part 1)

Postby Arron on May 29th, 2008, 10:15 pm

These are just some of my answers to private messages I have gotten that I thought I would delete the names from and share with all of you to help you understand what BFS is and what the differences are between ALS and BFS. By reading my replies, you can clearly understand what the questions were. Hopefully some of this will help you to better understand the differences between BFS and ALS. This is so much text, I had to put it in 2 parts.

Here ya go;



Re: Visibility of twitches / fasciculations in BFS

Hi XXXX, the unfortunate thing with BFS is that to this day, a lot of really good neuro's still don't know much about it, and that is a complete shame. The diagnosis of having a benign condition as opposed to a fatal condition is every bit as important to the patient at hand, and when the neuro can't give accurate information about the benign condition, it does a serious dis-service to the patient and can literally ruin someone's life for a couple of years, until he (or she) figures-out (by self educating themselves) the in's and out's of BFS, such as with our web site, which is exactly why it was formed in the first place.

I can say with more than 100% confidence (and I am willing to challenge ANY neuro on this) that 2 things he said are completely wrong.

1) It is actually a GOOD sign that you can see twitches. A true fasciculation (such as in ALS) is a tiny little muscle movement that in most cases can NOT be seen. ALS twitches are NOT big thumping, jumping, jolting "random" twitches, no matter where they are located. Most people talk about being able to see their clothes move when larger twitches in BFS occur. No "true fasciculation" on the planet can do that. A finger moving as if you are tapping your fingers is NOT a true fasciculation! A true fasciculation will move only a tiny little part of the finger of which you most likely won't even feel, not the whole finger, especially at the joints as if "you" are actually movng it yourself.

2) Tounge twitching is common in some people with BFS. Other people seem to not get them but quite a few do from time to time. Even I have had a tongue twitch or two over the years. That is NOT a bad sign at all, especially if you already have other standard BFS symptoms. Now, I can see maybe where if you had no previous twitching at all and all of the sudden, just your tongue started twitching, and then you noticed swallowing or eating problems, then that could be a pretty bad sign of bulbar onset ALS. Even with that, you would need an EMG to verify it. Like I said, a lot of people with BFS get tongue twitches. It makes sense... it's a muscle and EVERY muscle on your body can (and usually will) twitch sometime or another with BFS. Even places you didn't even imagine was a muscle will twitch.

Once you have BFS and you know you have BFS, you can pretty much rule-out any other twitches as being sinister. NO ONE to this date with BFS has gone-on to develop ALS. Don't get me wrong. I am not saying BFS holds-off ALS. It is just that so far, out of ALL the people that THOUGHT they had ALS, and ended-up having BFS have never come down with ALS yet, and that is a LOT of people over a lot of years, so anyone's odds of getting ALS after having BFS is pretty slim to say the least.

I would try not to worry about it. ALS is extremely rare as it is and being diagnosed with BFS even stretches those odds out more.

Hope that helped. Have a good one!
Arron




Re: My fears

Hello there XXXX, after all those negative EMG's and all of the exams you've had, it would be about as impossible for you to have ALS as you can get.

BFS affects muscles, right? I mean, a twitching muscle actually gets tired, sore and fatigued, right? A LOT of people talk about feeling "drained", fatigued and just no energy when they have a lot of twitches going-on, which is logical... after all, your muscles need energy and fuel to move, so if your mouth and tongue have been twitching and are a little stiff, sore or fatigued, you might notice a slight slur in your speech or notice that you have to use a little more effort to get the words out. This is simply because your mouth and face muscles are tired from twitching all the time. I have experienced this myself first hand numerous times, especially when BFS is in its early stages and your anxiety level is running rampid.

Haven't you ever seen those electric exercise machines on TV that puts an electric current through your body and causes the muscles to contract? Although that system hasn't really been proven to work for "exercise", it does however cause muscle contractions, which eats-up energy and will cause you to feel like you just had an exercising regiment, so why would you think that your face muscles couldn't be doing the same thing after they have been twitching all day long from BFS? A contraction is a contraction is a contraction.

Although we still don't know what actually causes BFS, or how it fires the muscles, (although a few of us old timer’s believe it is a chemical imbalance. After all, EVERYTHING in your body is some sort of a chemical), the end result is still the same, your muscles are WORKING. ANY time you "work" a muscle, it is going to feel that way.

Go run around the block and come back and try to mow the lawn. It is going to be a LOT more difficult to push the mower around after running a mile than it would if you didn't just work the heck out of your leg muscles, right? It’s the same logic with BFS.

Contrary to what people make of BFS, it isn't brain surgery. In fact, it's actually quite simple how it works, what it does, and how it affects us all, and we have tens of thousands of documented accounts to support everything we know by CUMULATIVE data that I, (and a few others) have averaged out and have studied over the past 10 years or so.

In what you described, you most certainly don't have ALS to worry about. Not at this point anyway. It doesn't mean you can never get ALS, or cancer or ANYTHING. It just means what you have going-on right now, and for the past 4 months has absolutely NOTHING to do with ALS. This can be said for any disease. You can get tested for cancer one year and be clean, and just because you were clean this year doesn't mean you can't get cancer down the road, but the one thing with BFS is that you can rest assured NONE of the symptoms you have are related to ALS, and BFS can not, and will not "turn into" ALS down the road, so don't even start thinking about that. It has never happened and probably never will.

That's like saying headaches turn into brain tumors. If that were true, everyone with a head ache is going to get a brain tumor because they both share that same common symptom….. a headache. Just because you twitch CERTAINLY doesn't mean it has anything under the sun to do with ALS. The twitches between the two aren't even close to being the same. They are completely different. Your doctor knows this too which is why he wasn't worried. You only know what you know and what you have been told, or had the misfortune of reading if it was outdated and incorrect information, which is still quite common. Wikipedia says “Thigh twitches” are a sign of ALS. That is the biggest line of BS I have ever seen! EVERYONE with BFS gets twitches in their thighs. I have had thigh hot spots for MONTHS on-end at times over the years!! Do I have ALS? Hardly! Again, TERRIBLE mis-information!

You want my personal advice from years of experience with this stuff? Mind you, I have watched thousands of people on the site with BFS come and go now..... You need to get out and quit dwelling on this stuff!!! You have had numerous tests in several places. You do NOT need to test each and every spot! ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. Twitches do not “cause” ALS by any stretch of the imagination, nor are “twitches” even a sign of ALS. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.

This is why doctors don't test everywhere on your body, and why "rookies" with BFS think a doctor should test exactly where the twitching occurred. It does NOT have to be tested in the finger, hand or even the limb where the twitching occurred.

The more you dwell on this stuff the worse it gets, and the best way to not dwell on it and get back to living life is to get out, stay away from web sites and move-on with life before something we all certainly face hits you... like old age and you look back and feel bad about how much time you spent (and lost) dwelling on something you didn't even have! Been there, done that. Don’t follow my path!




Re: My fears

Yeah, you have WAY better things to be doing than wasting your time (which is EXACTLY what you were doing) on something you CLEARLY do not have.

Yes, BFS is odd and it can be scary AT FIRST when you are uneducated and mis-informed about the actual symptoms and differences of ALS and BFS. You are educated now and KNOW that you have several clean EMG's and months of twitching behind you (and you WILL twitch in new places and have days where you won't twitch, and other's where you will twitch all over your whole body) and that's just the way BFS is, which is NOT the way ALS is what so ever.

Get out, take the kids to the zoo, take the wife out to dinner, enjoy life and be happy that you only drew a card with BFS on it. It is TOTALLY tolerable and even with what we consider bad days (lots of twitching or fatigue), those are NOTHING compared to the things on the best day with someone that has ALS.

You WILL have hot spots (twitching for days on end in the same place), and days where you feel drained or weak, but it WILL go away after few days after. You will twitch in places you didn't even know could twitch, and sometimes they'll even make you laugh because of their location (yes, even there ) but it isn't ALS or anything that is going to do any serious harm. Don't try to ignore it. Know it is there, know it is BENIGN, and move-on.




Re: Tongue (Tough Love Reply)

Hi XXX, didn't I say (as well as pretty much everyone else that posts on the web site) about muscle fatigue, pain, "drained" feelings and even "perceived" weakness?

Now the answer to your second question; Isn't your tongue a muscle? And didn't I say you WILL twitch, feel pain, fatigue and slight or "perceived" weakness in EVERY muscle sooner or later? And even in muscles you didn't even know you had? So what makes you even remotely think this has anything to do with anything OTHER than BFS?

BFS can sometimes be associated with pain and cramps (although not actually a "Charlie horse" cramp). There is a whole other version of BFS that is not quite as common as regular BFS called BCFS, which stands for Benign CRAMP Fasciculation Syndrome. So with that, and ALL the incidences of people complaining about twitches, slight cramping, pains, what they THINK is weakness, clumsiness, drained feelings, fatigue, and so on, why would you even consider this to be something new and different???

You fell off the wagon after two days. Not a very good start. Like I said, you do NOT have ALS and your multi EMGs and CLINICAL tests absolutely prove it without a shadow of a doubt. No ifs, ands or buts about it.

Like I said, you need to get OFF the computer, stay away from stuff like this, go enjoy your life and QUIT DWELLING ON THIS STUFF. You just ruined another night's sleep and another day of worrying about something YOU DON'T HAVE. I can't think of a worse way to waste human life “time” than dwelling on something that doesn’t exist.

If you feel compulsed to look on the internet, at least do it with something that justifies your time, like looking at something you enjoy.

Now... step away from the computer and quit worrying about every little thing that happens. Geeze, if you have a headache, are you going to hit the brain tumor sites and start freaking out about that sort of stuff too? I doubt it, but you ARE doing the very same thing with this stuff. Just because you have something that has ONE side effect of twitching absolutely does NOT mean it has ANYTHING to do with ALS twitching in any way, shape or form.

It's time to move-on from this cycle of fearing something you CLEAERLY don't have.

Have a good one!
Arron




Re: Leg ripples

Answers to your questions are:
Q: Any advice ?
A: This is exactly what my legs do when I apply force to them. The muscles will ripple until I relax them.

Q: Should I be concerned ?
A: No, not at all. If it was something of concern, I would have noted that on the forum or in “BFS in a Nutshell”.

Q: What happened with your ripples?
A: Nothing, they are still there sometimes.

I'm still breathing, walking, talking, working and otherwise as healthy as I ever was, just like you'll be too, and everyone else that has BFS. There is NOTHING with BFS you need to be concerned about. It is weird, odd, sometimes it has pain & fatigue that goes along with it, sometimes it has odd feelings and feelings of weakness without any real weakness, but it is all benign. It'll come and go at random and you WILL have odd twitches and feelings in places you never even thought could twitch. That's all just part of it.

Sooner or later it all seems to go away, but that won't happen as long as you dwell on it. The first step to “the cure” is getting on with your life and not paying attention to it, then understanding that wasting energy on something that is benign is on the same lines as freaking out every time you get a head ache because you think you have a brain tumor.

Some people get BAD headaches EVERY DAY and yet NEVER have a brain tumor. Other's never have a headache in their life, yet die of a brain tumor. Just because you have some random twitches CERTAINLY doesn't mean it has anything at all to do with ALS twitches.

You have something just like many people have, an oddity, but it's BENIGN! Just be glad it isn't something like having daily migraines like MILLIONS of people suffer from each and every day. That too goes unexplained and there is no cure, just like BFS, but they go on with their life and deal with it. At least BFS isn't even as close to being as painful as what those poor people have to go through. I think you get my point by now.....

Have a good one,
Arron




Re: Thank you

Now you've hit the nail on the head XXX, and have discovered the only real cure for BFS (so far). It's to "let it go" and quit dwelling on it. Once you do that, the anxiety (and most of the twitches) goes away and you are back to living a normal life again

It's hard for people to understand what you just discovered, that dwelling, or fearing a benign condition is ludicrous! Even wasting one minute fearing something that won't hurt you is absolutely nuts. It's like us guy's watching a girl freak out over a tiny little bug running across the floor. It doesn't bite. It ain't poisonous, and you can end it's life instantly with about 3 ounces of foot pressure, yet some girls will scream, jump up on a chair, freak out and run out of the room, and any "normal" person will look at that and think girls like that are letting their mind go completely out of control over absolutely NOTHING!

People that dwell on BENIGN symptoms such as BFS and let it take away their life are every bit as nuts as those kinds of girls! There is no difference what so ever, just as I said about people freaking out every time you have a headache. Just because you have a headache certainly doesn't mean it's a brain tumor, and out of the tens of millions a day that get headaches, only a tiny fraction of one percent actually get a tumor, and even then, most of them never even had a headache as a first symptom, just as "twitches" are not a typical first symptom of ALS. You have to HAVE the disease IN PROGRESS to get twitches, and by that time an EMG will CERTAINLY show the abnormalities and you WILL be having true, clinical weakness.

As I said, you just woke-up to reality with this stuff and have discovered the cure. Do NOT let it keep haunting you. It is benign, and as far as my records go back with people I know that have suffered from this stuff for over 30 years now, NO ONE has gone on to develop and disease or become crippled from BFS... NO ONE! That's a pretty good indicator to get on with life and not let something as silly as this take your life, family and friends away.

Have a good one!
Arron




Re: Sorry, need advice

Dude, twitching in ALS is a direct result of the disease running it's course. It is NOT a pre-curser symptom! In other words, if you have twitches that are associated with ALS, it means the disease is ALREADY running its course because muscles diseased with ALS don't begin to twitch UNTIL micro fibres begin to die and disconnect. With that, ANY EMG at ANY TIME would CLEARLY show the disease, no matter how far along, or how early you THINK you are. There is no "incubation time" or "window frame" once ALS twitches have started. If it's ALS and you are twitching, the disease is ALREADY well into running it's course, and of course, will ALWAYS show up on an EMG, no matter where it is performed on your body.

If you have a cold sore on your lip, do you need to get a blood test ON your lip to diagnose it as Herpes? No! Why? Because it is IN your blood. Just because the symptom is on your lip doesn’t mean you can’t detect it elsewhere. Actually it (Herpes virus) resides in your spinal cord.

With that, just because you twitch in one small place on your body doesn't mean ALS isn't running all through it. Nerve pathways run the entire length of your body. You can get tested just about anywhere and it will show-up, just like getting a blood test will show why you have a cold sore, even though a cold sore almost always appears and re-appears in the same exact location, over and over again, it is STILL running through your whole body, just like ALS is.

BFS twitches do not show up on EMG’s most of the time because they are completely different (not true fasciculations) and are not even remotely related to ALS twitches (which ARE true fasciculations). This is why all of your EMGs have been "clean", because you do NOT have ALS.

Get tested over and over again and the results will still come-up the same.... "clean". This is because you clearly do not have ALS. All you are doing is wasting your time (and the doctor's time) getting more EMG's. It has been proven you don't have ALS so it's time to move-on and get back to life.

Have a good one,
Arron




Re: Thanks

Hey there buddy, glad to hear you are doing great and not having any more BFS problems!

I just had a bout of fairly aggressive symptoms for about a month myself, after a couple of years of being pretty much symptom free, so IF you ever do get a relapse of symptoms, just remember it is ONLY BFS and it WILL get better and go away sooner or later.

That is the "cure" for BFS... knowing it isn't anything serious and that it will eventually subside again. Once you know that, and you don't feed it with adrenaline, stress or anxiety, then you are much calmer and not as freaked-out and have no need to worry about it. Plus by not getting all freaked out about it, it helps it pass much faster and keeps the symptoms down to a minimum. I am sure you know that by now. I had to even tell myself that when I had that bad bout of symptoms a couple of months ago.

It was great hearing from you! Take care my friend,
Arron




Re: Thank you

Hello there XXXX, I am glad the site has helped you. I KNOW the feelings you are experiencing. Been there, done that... and it sucked!

I lost about 2 years of my life to the overwhelming anxiety associated with the constant wondering if something was "brewing" and constantly testing my strength, balance, etc. when I first came down with BFS.

Doctors need to cover their butts. With that, they never say for sure that you don't have anything. That's why he wants to cover his butt by seeing you again in 6 months. Just remember, twitching in ALS is a secondary reaction to the disease already in progress. It is in no way a "first sign". If you were twitching and you had a clean EMG, you don't have ALS, period. It WILL show up on the EMG, even if you weren't twitching at the time of the EMG and even if he tested you in a different spot from where you normally twitch, it would have still shown-up. Your EMG and basic neuro exam was clean, so in the moments of anxiety, just remember that you do NOT have ALS.

It does take some time to convince yourself that nothing is wrong, and odd symptoms WILL pop-up from time to time that might make you wonder... or may even scare you, but just remember, ALL of us with BFS experience the exact same things and we are all still here, year after year, decade after decade, and other than a few oddities here and there... we are all just fine

Do NOT let this "benign" condition run your life! Just because something is "benign" doesn't mean it won't have symptoms or odd feelings from time to time. No one said the word "benign" means no symptoms or no pain. You can, (and probably will) experience a little pain, discomfort, weak "feelings", rubbery legs, and so on from time to time, but it is not going to render you helpless, useless or unable to go on with life as usual.

An accidental smack in the face is benign. Sure it hurts, but you won't go blind or lose control of talking or eating because of it. It's an odd analogy, but it is the only one I could come up with on a spur of the moment to illustrate that just because something is benign, doesn't mean it can't have pain or some not-so -pleasant feelings associated with it.

Go take your kids out for an ice cream, enjoy the day and KNOW that what you have may be a nuisance sometimes, but it is NOT life threatening in any way, shape or form

Have a great day!
Arron




Re: Thank you

Hi there XXXX, I am glad to hear you are hangin' in there. You are well on your way to the "cure" to BFS, and that is - realizing it is benign, not letting it control your life, and not "testing" or "doubting" yourself anymore. Once that happens and you become calmer, your symptoms WILL subside and you will be back to a normal life, with a twitch or two here and there, or maybe an odd day or week here and there. No big deal KNOWING it is benign, just like getting a cold or the flu every year. It is a week or two, and sometimes 3 of feeling not so pleasant, but you certainly don't let "it" run your life.

I have to say, your neuro is both wrong and right. Yes, you can smell smoke and it could be the neighbour’s trash can, or it can be a forest fire headed your way. The difference is TECHNOLOGY! If we smell smoke we call the fire department (your doctor) and they send-up a helicopter to see where it is and how big it is. Your EMG is the helicopter. If all you see is a small plume of smoke coming from a chimney, and you are 5,000 feet up in a helicopter. it is 100% absolutely safe to come back down and tell the local news not to worry, that it is not a forest fire, just someone's stinky chimney. That is as definitive as you can get. The EMG is the same thing. It can tell a forest fire from a small amount of smoke coming from a chimney and there is a HUGE difference between the two. Just because there is smoke doesn’t mean it is a forest fire. EMG’s are as definitive as going up in that helicopter. I think pretty much anyone cal tell the difference between 50 foot flames engulfing thousands of acres and someone’s chimney. That difference is about the same as ALS and BFS, from the twitches to the EMG results. Why continue to believe there is a forest fire when A) you don’t live near a first, and B) the helicopter SAW that there was no fire.

As I have said before, twitches in ALS are caused by the disease already running its course. In fact, you won't even twitch with ALS until nerves have already started dying! It is a secondary symptom, not a precursor symptom, so if you send a helicopter up (the EMG) to see where that smoke is coming from and there is none in sight, it's about as definitive as you can get that nothing big or bad is going on. I guess your neuro forgot to consider the technology we have, and that we can indeed, with 100% accuracy tell the difference between a stinky chimney fire and a forest fire, just as we can tell immediately between benign twitches (which 98% of the time aren't even true fasciculations), and ALS twitches, which 100% of the time are true fasciculations. Even the handful of BFS'ers that do get a few true fasciculations here and there are still benign because the root cause of the twitch is not caused by a "disease" such as ALS. That's what the EMG looks for, and it is accurate, VERY accurate! Just because your neuro is a “neuro” doesn’t mean he is educated in BFS, or the variance in symptoms of BFS. If he doesn’t KNOW the difference and can’r be 100% DEFINITIVE in his diagnosis, I would suggest finding a neuro who is more educated and confident in his own work, because your guy is definitely not.

Just remember, ALL doctors (even really good doctors who ARE educated in BFS and ALS) need to cover their butts! In this sue happy society where people completely at fault can sue and win against someone that had nothing to do with the situation, doctors are VERY cautious in what they say. It is drilled into them to NEVER be 100% positive when giving a free bill of health, which is why the medical society never removed the term "medical practice" from what doctors do. You want to have someone do your taxes during an audit that is just "practicing"?, or do you want someone that knows what the heck he is doing? There is a reason behind why they keep that term around.

The bottom line is you had a clean EMG. That right there is as proof positive that you do not have anything serious going on as you can get, plus the fact of the KIND of twitches you have. Most ALS victims can't even feel their twitches. One reason is, the places they are twitching already have dying nerve pathways. How can you feel anything if you have no connection between that twitch and your brain? There is nothing there to carry the information to your brain so you can feel it because the nerve pathway has been disconnected.

Also, "true fasciculations" are tiny little ripples, not thumpers, jumpers or tremors that you can see, feel, or that move or cause limbs to jump, and they are certainly not something anyone standing near-by would see. BFS twitches can range from small, fast vibrations (which are just tiny, high frequency twitches too small to move any tissue), to giant thumpers that will make your whole arm or leg move. ALS "fasciculations" are little teeny micro ripples in a small little area, and they are not random wide around your body. They follow a path of destruction. If you get ALS in your thumb, your twitches will start in your thumb and work their way up your arm as the disease migrates up that arm, leaving a completely weak and useless arm in its wake. That is nothing like BFS, not even remotely. This is what I and John (the original founder of this web site) try to convey to everyone. The problem is though, people get SO freaked out, they just don't listen to reason and they continue to believe that it MUST be something else, and that everyone else MUST be wrong, when the fact of the matter is, it is just BFS. Don't follow those people's paths! Get out, enjoy life, play with the kids and don't let something "benign" run your life. It is OK to know it's there and to feel it is there, just don't let "it" run "you".

I hope that helped. Have a good one!
Arron




Re: muscle weakness

Muscle fatigue is a BIG symptom of BFS, or let me re-phrase that, temporary muscle fatigue and "perceived" weakness is a major part of BFS.

Haven't you seen posts of people talking about feeling "drained" or feeling like they just ran a marathon after walking up one flight of stairs? A LOT of people experience it, including myself from time to time. It comes and goes at random.

One day you can push a car up a hill with 4 people in it and not feel bad at all, while another time you'll get tired pushing an empty shopping cart down one isle of a store. In fact, you can get so fatigued (before you even do anything), that it is difficult to hold your arms up to even push the shopping cart. I have had arm fatigue a couple of times that lasted a few weeks where it was tiring for me to even keep my arms up on the steering wheel while driving. I used to let my left arm dangle between the door and seat because it would get so tired.

Symptoms like that come and go at random. They can last for hours, days or even weeks. Everything about BFS is random. That is why it is so hard to pinpoint.

If you have been twitching since February and you have no "clinical weakness" (which your neuro exam proved), and no loss of muscle control, atrophy or anything like that, then it's safe to say you have BFS.

With twitching being the symptom of already existing ALS IN PROGRESS, after 7 months of it, you would definitely have serious and definite symptoms by now that would not only be visible, but also physical to the point of having difficulty getting out of bed or even brushing your teeth.

Now... do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.

I get fatigue in my hands on occasions where they just feel stiff and not as articulate as they are on other days. A day or so later, they are just fine again. Sometimes I get the shakes and other times I do not have the shakes. Sometimes I have no twitches at all, and other times there are spots all over my body that are all twitching at the same time. Again, BFS is random where ALS (and other neuro muscular diseases), are not. Once they take hold, it is a continuous downhill stream from there, which is NOT what you have described to me what so ever. From what you have described to me, it is pretty clear you have a classic case of BFS, right down to a T.

The worst thing you can do it worry about it. Worrying and being anxious releases chemicals in the body that feed BFS, especially in the early stages. After a while, it will build a sort of immunity to it, much like taking certain drugs lose their effect as time goes by. It IS scary at times when you are unsure and don't know all of the facts, but trust me, if you were twitching all this time and it was something bad, you would have DEFINATE and SERIOUS symptoms by now. With BFS, time IS on your side.

Have a good one,
Arron




Re: muscle weakness II

No problem XXXX. The trick to a "cure" is a few things.

1) Do NOT test yourself for strength. Several times of self testing a day drains more energy than you think, and it causes pain and fatigue a day or two later which new BFS'ers think is more weakness. It's like throwing gas on a fire.

2) You WILL twitch, shake, jolt, have fatigue, feel overly tired after exertion (exercise intolerance), have weak "feeling" that come and go and so on, so EXPECT it rather than being surprised when it happens.

3) Do NOT panic! Being anxious feeds BFS and it makes symptoms worse, which causes you to panic even more. It is a vicious cycle that is hard to get under control. One of which drugs DO help, such as Ativan, Xanax, Klonopin and other "benzo" drugs. Stay away from SSRI drugs (Paxil, Zoloft, etc.) Just trust me on that one! Ask your doctor about some of the meds I mentioned and see if one works for you. They can really help you get through the intense times of high anxiety. My personal favourite is Ativan at 1mg per tablet.

4) FIND SOMETHING TO DO to help keep your mind off of it. Go to the mall, go to Disneyland, go to a casino, go hang out with friends at the beach... just GO. When you sit around, especially while alone, all you'll do is dwell on it more. If you can get your mind off it for even a short while, it'll help you understand that it is BENIGN for the simple fact that if it were anything serious, you would have no choice but to deal with it each and every minute of the day, but after walking around a mall all day or riding rides at Disneyland you'll forget about your "symptoms" for a while and realize that it can't be anything that bad. Doing this helps you get over the fear and that life can (and will) go on just fine.

5) Understand that NO ONE around you will understand your fears or symptoms. It is VERY hard to talk to someone about just how intense the feelings, sensations and symptoms are from BFS. Just be prepared is all I am saying.

6) TIME is on your side, and much of it has already passed. Like I said in my past reply, if it were something like ALS, you would KNOW it by now and would have definitive consequences from the disease. BFS does have physical symptoms. It is a physical syndrome, NOT something that is just in your head! You WILL feel odd things going on, and that is all normal protocol for BFS. Just shrug the symptoms off as "normal for BFS" and move-on with your day.

7) DO NOT let BFS run, or ruin, your life!!!! It is a BENIGN "syndrome" that DOES get better with time. Trust me on that

Hang in there. It WILL get better, and trust me, even after your clean EMG, you will STILL doubt the results. It is just part of the way BFS chemically changes the way you think and rationalize things. Time will heal it and after a while, you'll just move-on and not even notice the symptoms anymore, IF they are even there. Most people have their symptoms subside by a LOT as time goes by, then they'll have a flare-up day or week and it goes back away again. Again, it is normal for BFS.

The more you know about it and the sooner you can get your mind off it, the closer you are to the "cure".

Have a good one!
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Re: Why You Don't Have ALS (part 1)

Postby LIndaJ on May 30th, 2008, 1:55 pm

Hi Aaron, thanks for your posts. We should all heed your advice and get back to living our lives.

I was telling another poster, we got a puppy 2 weeks ago, and I have been so busy with her my twitches amped down to next to nothing. I am not suggesting BFS is mental, but I do think the more we dwell on the twitching, the worse they can get.

Thanks for taking the time to post and reassure all the rest of us that what we have is benign.

Linda
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Re: Why You Don't Have ALS (part 1)

Postby SwedishGirl on June 2nd, 2008, 11:31 am

Thanks for a great post! :-)
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Re: Why You Don't Have ALS (part 1)

Postby gmigary on June 11th, 2008, 4:22 pm

Aaron,
I have just joined the forum and your post was one of the first ones that I have read. I've been researching BFS for 18 months since my symptoms first appeared. I have been to the neurologists on numerous occasions, complete with the ALS and MS tests being negative. The information that you shared is probably the most comprehensive and reassuring thing that I have read. This twitching, perceived weakness, lack of energy and anxiety has really put a damper on my life, and I'm sure on the lives of my family and loved ones. The sensations are impossible to ignore and therefore are usually in my thoughts. The only time I really feel somewhat normal is when I'm playing basketball or doing something that really takes all of my attention. I have really gone through a full range of emotions the last year and a half and not the least of which is guilt for being so weak that I can't shake (no pun) this thing mentally. I've used Zanax and other benziods sparingly, reserving them for times of extreme or prolonged anxiety. Sleeping pills have really helped because I was too nervous to sleep and therefore exacerbating the problem of the twitching. When I got the symptoms I was 50 going on 35. Now I'm 52 going on 65. I'll do my best to take your advice and reduce stress and worry. I can't see living the rest of my life with the BFS controlling me the way that it has.

Good luck to you all,
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Re: Why You Don't Have ALS (part 1)

Postby zekebcfs on June 11th, 2008, 7:56 pm

gmigary
Relaxing is one of the things I have always had problems with. I know you asked Aaron but relax and take it like a Human entitlement. The ride is short even without ALS or MS. I say fu*k the stressors, problems etc etc. Heal yourself first! I also eagerly read Aaron's posts!
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Re: Why You Don't Have ALS (part 1)

Postby raindog on June 12th, 2008, 5:38 am

gmigary wrote:Aaron,
I have just joined the forum and your post was one of the first ones that I have read. I've been researching BFS for 18 months since my symptoms first appeared. I have been to the neurologists on numerous occasions, complete with the ALS and MS tests being negative. The information that you shared is probably the most comprehensive and reassuring thing that I have read. This twitching, perceived weakness, lack of energy and anxiety has really put a damper on my life, and I'm sure on the lives of my family and loved ones. The sensations are impossible to ignore and therefore are usually in my thoughts. The only time I really feel somewhat normal is when I'm playing basketball or doing something that really takes all of my attention. I have really gone through a full range of emotions the last year and a half and not the least of which is guilt for being so weak that I can't shake (no pun) this thing mentally. I've used Zanax and other benziods sparingly, reserving them for times of extreme or prolonged anxiety. Sleeping pills have really helped because I was too nervous to sleep and therefore exacerbating the problem of the twitching. When I got the symptoms I was 50 going on 35. Now I'm 52 going on 65. I'll do my best to take your advice and reduce stress and worry. I can't see living the rest of my life with the BFS controlling me the way that it has.

Good luck to you all,


This is near on identical to what i felt like...you know before it stated i was 44 but felt 24 then when it all started i felt i'd aged 30 years overnight and felt this way for 12 months or so, with the 24/7 twitches,fatigue, brain fog, aches, pains, sensations , cramps etc..

Now i'm back to 46 feeling 26 again...this condition can be beaten imo, you have to remain positive and change your lifestyle completely. Look at a few of my posts to see what i did and how it helped me. What i recently did after reading that it benefited someone here was give myself the Candida treatment of Threelac with Oxygen elements max and nurisorb molybdenum...i must say its made a deal of difference with the cramps and aches and pains, my skin is more supple and less dry etc im 100 percent focused no brain fog etc.. I get the odd twitch now and again but i hardly know they are there and dont worry at all.

BTW I was first put on citalapram and sleeping tablets ...but i only took these for maybe 4 months and came off them as soon as the neuro told be it was begnin.

Good luck ...if you want to beat this you can honest
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Re: Why You Don't Have ALS (part 1)

Postby MarioMangler on October 24th, 2008, 1:24 am

I can't imagine there are too many people here who haven't read this thread before, but if you haven't, here is one of the best posts in the history of this message board. Arron has already done all the research on this subject, you guys. If his posts don't reassure you you don't have ALS, I'm not sure what else is ever going to be able to.
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: Why You Don't Have ALS (part 1)

Postby nervousguy1 on October 7th, 2009, 11:10 am

Bump for the people who havent read this yet.
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: Why You Don't Have ALS (part 1)

Postby MarioMangler on July 22nd, 2011, 11:30 am

Bumping this old thread that I am surprised has never been stickied before. Mods, you can sticky this to the top of the boards somewhere? This and part 2.
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: Why You Don't Have ALS (part 1)

Postby RandyR on July 22nd, 2011, 11:43 am

MarioMangler wrote:Bumping this old thread that I am surprised has never been stickied before. Mods, you can sticky this to the top of the boards somewhere? This and part 2.



I second the sticky mods!

Thanks Mario I have never seen this before, what a great post Arron....
PAX ARMIS ACQUIRITUR


But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: Why You Don't Have ALS (part 1)

Postby garym on July 22nd, 2011, 11:05 pm

I'm working from a phone but I'll try to make it sticky.

Take care,
Gary
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Re: Why You Don't Have ALS (part 1)

Postby MarioMangler on July 22nd, 2011, 11:38 pm

You're on the phone and you are trying to make it sticky? Ew. TMI.
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: Why You Don't Have ALS (part 1)

Postby nonstoptwitcher on July 23rd, 2011, 12:55 pm

This is just what I needed to get back on track. Time to get out of my relapse and move the hell on. Thanks. :)
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Re: Why You Don't Have ALS (part 1)

Postby suzannj on April 13th, 2012, 10:01 am

I am so thankful I added this link to my favorites and was able to re-read this post again. Haven't been on for a LONG time, and here I am AGAIN. Having those sickening thoughts creep in after thumping-twitching in my left upper arm / shoulder all last night and into this morning. My arm is so fatigued I am typing this with my right hand only. BUT . . .I just read this wonderful link again and have been talked down off the roof.
Thank you, thank you, thank you.
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Re: Why You Don't Have ALS (part 1)

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