Facts about BFS and ALS

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Facts about BFS and ALS

Postby Arron on March 8th, 2004, 4:47 pm

ALL of the quotes below were taken from the neurologists at the MedHelp.org web site.

I have to put the quote of one doctor first, because this is VERY important, and it is why you won't see a "definite" answer. They HAVE to cover their butts!

"I try not to say "always" or "never", especially when I'm making a comment on someone I've never seen."
Hence why you always hear them say, “strongly suggests” or “points to”, etc. Now onto the quotes...

"The disease does not affect the person's ability to think. It does not produce abnormal sensations (tingling or numbness) or loss of sensation."

How many of you have other strange sensations? Then it's certainly NOT anything to do with ALS.

"In general, weakness progresses steadily with no periods of improvement or stability and leads to death, usually within 3 to 6 years."

DEATH in 3-6 years. Not twitching for 3-6 years with no major symptoms. Been twitching for a year now? Two years? Well, if it was ALS, you'd be having some pretty MAJOR symptoms by now, for sure.

"The findings consistent with neurogenic atrophy on the EMG is hard to dismiss, and the description of increased irritability on the EMG is consistent with the sort of nerve problem where innervation is gradually withdrawn from muscles.
Your description of fasiculations is also significant as it is further evidence of denervation of muscle."

That says DENERVATION is the cause of ALS fasciculations, which would mean that ALS is present when fasciculations are seen.

"There are several situations in which a muscle may fasciculate. If a nerve to the muscle is damaged, the central control over contraction is disconnected so muscle fibers just sort of go on their own. This "denervation" phenomenon can be seen with injury to specific nerves or in a more widespread condition like ALS."

There's yet another explanation of DENERVATION as the CAUSE of ALS fasciculations. As he so well put it, "sort of going on their own"? Again, if you twitch and it was ALS. the disease would ALREADY be present. Fasciculations in ALS are CAUSED by the disease. Fasciculations are NOT an indicator of ALS UNLESS there is weakness AND denervation shows-up on an EMG, and if twitches are present, the disease is present.

"There are pretty strict requirements for EMG diagnosis for ALS. They include three areas that show definite fasciculations, fibrillations, low amplitudes on conductions studies with a completely normal sensory conduction study. The areas that are included are bulbar, spinal, limb, and facial. If the EMG reports says, completely normal exam, you can be pretty sure you do not have ALS."

"STRICT REQUIREMENTS" in 3 areas of DEFINATE nerve damage. Not a clean EMG, or one that shows a basic fasciculation without any nerve damage. That's a pretty clear statement."

"The criterial for ALS by EMG include 3 different muscle groups with fibrillation, fasciculations, or sharp waves."

There it is again (needs to have 3 different DEFINATE areas) in another answer to someone.

"ALS does not give a patient pain, so I would not think he has ALS. Muscle weakness, fatigue, cramping, without sensory changes, an abnormal EMG that shows positive sharp waves, fasciculations and maybe fibrillations are the hallmark of ALS."

Really, can it get any clearer that that?

"For diseases that affect the neuromuscular system in general such as carpal tunnel syndrome or weakness/numbness related to trauma like a car accident or surgery, the rule is that nerve changes will not show up on the EMG until 3 weeks after the symptoms start. This is NOT true for ALS. Research is showing that there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs. What does this mean? Well, when a person comes in with weakness of specific muscles known to be affected early on in ALS like the hand muscles or the neuro exam shows things like brisk reflexes at the same time as weakness and wasting, then doctors tend to think, "This may be ALS, but I'm not sure because he doesn't have fasciculations." Then this person goes to get an EMG and they can see little changes that point to the diagnosis of ALS. However, if you already have true fasciculations whether it's ALS or benign fasciculation syndrome, then that fasciculation will show up on the EMG in the pattern of a fasciculation. If it's just twitching it will NOT show up as a fasciculation, which is a specific, well-described EMG finding that most neurologists should be able to recognize when they see it. So if you're having twitches and they're not showing up as fasciculations on the EMG, then it's probably not a fasciculation."

Did you see what he said? "there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs. The rest is pretty clear as well...

"ALMOST ALL patients with fasciculations who have ALS, will have an abnormal neurological examination (i.e. show signs of weakness, atrophy, corticospinal involvement, or bulbar/pseudobulbar involvement) when examined by an experienced neurologist."

That means WHILE they are having twitches, if it was ALS, pretty much ALL people have some kind of TRUE weakness, atrophy, etc, ALONG WITH the fasciculations. Do any of you actually have "clinical weakness" or true atrophy? No. Not that I have read in any of your descriptions anyway.

"If the fasiculations are not accompanied by atrophy or weakness, what is the probability that they are ALS related? Again, I have read that they are only ALS indicative if they are the RESULT of weakness/atrophy. Thus, I'd think that fasciculations in the absence of the other symptoms would be a pretty darn good sign."

Did you get that? "they are only ALS indicative if they are a RESULT of weakness / atrophy". That means that in ALS, dead and dying muscle tissue is AREADY present if you are having twitches, and weakness / atrophy is the CAUSE of ALS twitches! BFS twitches do not "cause" ALS, and if you have no weakness or atrophy, and ESPECIALLY if you have a clean EMG, you do NOT have ALS!!!

"How many people suffer from benign fasciculations, and how often do they last on average? Sporadic fasciculation is incredibly common, occurs in the majority of normal individuals off and on. Some individuals are more perceptive to these twitches and tend to report them, sometimes from fear of having a serious neurological problem. Most experts agree that a subset of individuals have more prominent, widespread, and persistent fasciculation than should be seen normally. These people often diagnosed to have the benign fasciculations syndrome. This syndrome is obviously quite common, but a prevalence figure is not available. One hundred and thirty seven individuals with benign fasciculations were identified and studied at the Mayo Clinic over a period of 28 years. Of these, 121 were available for a follow-up interview after a mean of about seven years; none had developed ALS, and about half had had a significant improvement. Interestingly, about 16% of the cases have a viral infection preceding onset of symptoms, and about 20% have emotional stresses."

That all pretty much speaks for itself...

"ALS usually starts in one limb (or else, in the bulbar- face/swallowing/tongue muscles), and then spreads to other areas."

Does it say random twitches all over your body that come and go? NO. That's because BFS twitches act differently than ALS twitches. ALS twitches start in one place and MIGRATE with the disease from that point-on. BFS are just randome pops and thumps with occasional hot spots. There IS a difference!

"Muscle fasciculations and weakness can be signs of ALS (and many other disorders), however you are having prominent pain symptoms as well which would not be typical of ALS."

How many of you have odd pains and sensations along with your twitching? (tingling, popping, pins and needles, hot spots, cold spots, and so on) A LOT of you do. This is NOT consistent with ALS!

"We worry about fasciculations when they are accompanied by objective muscle weakness, muscle atrophy, and no sensory symptoms."

Again, another answer to support what was said above. No weakness or atrophy associated with twitching meas no ALS.

"In the case where there are no findings of a neurological disease (usually meaning a normal neurological exam, normal laboratory values of routine blood work), a medical history of no chronic neurological diseases or trauma, the diagnosis by exclusion is benign fasciculations. They cause no damage, either muscular or neuronal, and they can wax and wane in their presence. Fatigue and anxiety can make them worse. They can present for days to years. They can be localized or generalized over the whole body. Sometimes they follow a viral illness, but sometimes they just seem to show up."

There are many facts to look at in this answer. To highlite a few; no hard evidence of viral corralation with BFS. Fatigue and anxiety make BFS twitches worse. Do you think dying muscle tissue in ALS gets affected by anxiety or stress? No way! BFS can last for years (which we all know). BFS twitches can be localized (hot spots) or all over the body at random. Really now, have you heard ANY ALS twitches described like that? Nope!

"To answer your questions, yes muscle weakness must accompany fasciculations to be ALS. It is part of the pathophysiology of the disease, as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS"

"...as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS" That's about as plainly as you can put it! ALS twitches are CAUSED by dying nerve endings AND dying muscle tissue. It is a SECONDARY action to the disease!!! Not a first symptom that causes muscles to die later-on. If you have twitches and it was caused by ALS, you would ALREADY have the disease present in your system which would show-up on an EMG. Twitches without weakness and with a clean EMG are NOT ALS. It can't get any clearer than that!

"With ALS, by the time the fasciculations begin there is muscle weakness and in many cases cramping. The EMG is positive for sharps and fibrillations."

Just more support for what was just said above...

"The EMG should find abnormalities, IF present, when muscle fasciculations are pathological. This is because, fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear. I have never seen a report where the EMG has been normal and the patient has ALS. This would not be the case in benign fasciculations because they do not occur due to observed abnormal pathology."

Again, plain and simple.... Clean EMG = NO ALS!!! As he so well put it "fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear".

"Unless there is EMG evidence, fasciculations are not diagnostic for any disease that we know the etiology of. Benign fasciculations occur without EMG changes or muscle weakness. They go away on their own (most of the time) and do not increase your chances of coming down with ALS."

This just supports what we've said over and over again....

"With the public gaining increasing awareness about the tragedy of ALS, it's understandable that people like you are concerned about the possibility of having the disease when you're experiencing unexplained twitching. Glad that you don't have any weakness as this is usually the presenting symptom/sign of ALS. Twitching is NOT always fasiculations. An experienced neurologist and EMG should be able to distinguish the two. But even if they are fascics, there are other conditions that can cause isolated fasciculations such as benign fasciculation syndrome or thyroid disease. In the setting of ALS, the presence of fasciculations represent degeneration of the muscle cells, which means that by the time you develop them there should already be some other symptom/sign such as weakness."

There are all of the facts again to support what we have been saying all along! If you're still not sure, read the above answer one more time and BELIVE IT! These are answers from TOP neuro's from around the world. This is up to date, ACCURATE info!

"Fasciculations caused by ALS are due to dying muscle tissue (actually necrotic). So, fasciculations due to ALS are always accompanied by muscle weakness and EMG changes. Benign fasciculation are not due to dying muscle tissue, but irritated muscle membranes. They are not accompanied by muscle weakness, nor are there EMG changes. Fasciculations can be seen in a number of diseases, such as nemaline rod myopathy. So, if there is muscle weakness with EMG changes, then fasciculations are due to a specific disease. When they occur in isolation, they are usually of the benign variety. Any and every neurologist will tell you this."

I love that... "Any and every neurologist will tell you this." Any more questions?

"Whether they occur in specific areas of the muscle is variable. In ALS they can begin in any muscle but usually it is the leg, but it can be the bulbar muscles, arms, etc. This will vary in a particular patient. Since muscle is not dying in benign fasciculations, they tend to be spread out and in a variety of muscle groups. In the early part of ALS they tend to be in specific muscles, more distinct, because the muscle is dying. The literature indicates that benign fasciculations are usually more spread between muscle groups and can worsen with anxiety and fatigue. They can reoccur in the same muscle groups and also be variable."

In plain English above... ALS twitches start in one small muscle group and migrate-on from that point, leaving a path of dead, un-usable, atrphied muscles in it's path. BFS twitches happen all over the place (with some hot spots) with NO weakness and NO atrophy. How long have you been twitching now? Isn't it time to just accept that it's BFS and move-on?

"There is no magic time limit of when you should have fascics after the onset of weakness. But in most cases, weakness does precede the fasciculations."

Gee, you think??? If ALS twitches are CAUSED BY dying muscle tissue, then it would be pretty obvious that SOME sort of weakness would be present BEFORE the twitches. At least enough to show-up in a true neuro exam and on an EMG. And with that, WHEN you have twitches caused by ALS, you HAVE ALS present, which means that it will show-up on an EMG.

“Q: In talking to fellow weightlifters, I'm struck by the number of them that report regular twitching while lifting and a fair number that have reported increased activity during rest periods forced by injury. My neurologist says this doesn't make any sense but my primary care doc seems to think there's some connection. He (we) note for example that after laying off weightlifting for several months, I've lost a fair amount of muscle mass. As that muscle atrophies, why wouldn't one expect a disturbance of the cellular, biochemical environment? ANY ideas as to how I could research this topic?”
“A: I agree with your primary doc, I have observed the same in some athletes or people who exercise regularly.”

Atrophy like appearances does (and WILL) happen in muscle that isn’t exercised or used anymore, or as vigorously as it once was. Hence what they said about weight lifters losing muscle mass during times off due to injury, etc. It doesn’t always mean a nasty disease. Is Arnold Swarzinagger still a mass of muscle? No way! I just saw him with his shirt off on TV and it was a flabby, scary sight!

“Muscle fasciculations is extremely common and is benign in isolation. It is only when combined with other symptoms such as atrophy, weakness, increased reflexes, difficulty swallowing or slurred speech, do we even think about ALS.”

“...only when COMBINED with other symptoms...” Not just twitching alone, or NON ALS specific symptoms (pain, pins and needles, fatigue, etc.) if you have any of these odd symptoms, it isn't ALS related!

“Twitches can be seen after excessive exercise, some electrolyte imbalances, and in a benign condition called benign fasciculation syndrome. In ALS the muscle twitches occur in areas were the nerves are being lost. Therefore, muscle twitches typically are seen in muscles that are becoming weak.”

You think???

“Of course, many people think ALS when they see fasciculations, but more commonly there is a different cause. In young people such as yourself, the most likely cause is "benign fasciculations" - that is, normal. Fasciculations occur when groups of individual muscle fibers twitch, but the rest of the muscle does not go along in synchrony. The twitch occurs without the command of the nerve - it's just on its own. Some of the symptoms you have (vibrating, bubbling sensations, etc) are not related to the fasciculations. They are NOT symptoms of ALS, which is a motor disease.”

Twitches alone, and “.... (vibrating, bubbling sensations, etc)” ... “are NOT symptoms of ALS...” Plain enough??

“The mechanism of cramps, in general, are not well understood physiologically (meaning with ALS or any other disease). Note that there is a difference between the perceived sensation of cramp and an actual hard contraction of muscle that leaves it quite tight and painful, which is a real cramp. Cramps can be caused by or seen in a number of states such as electrolyte disorders, exercise (especially with dehydration and sweating), pregnancy, overuse/exertional, possibly some enzyme abnormalities, and muscle diseases. As your symptoms were transient and not associated with progressive weakness and muscle wasting, it's unlikely that they represent ALS.”

Common “cramp like” pains associated with BFS are not the same PAINFUL cramps “charlie horse / take your breath away” kind of cramps you get LATE in the ALS disease.

“Usually the patients that we see who have tongue fasciculations have the typical signs and symptoms of ALS that has significantly progressed (prominent weakness and muscle wasting). The tongue fasciculations are NOT the presenting symptom unless they are accompanied by markedly slurred or even absent speech, difficulty moving the tongue due to atrophy and weakness, and profound difficulty swallowing. These patients are quite sick and many of them have had dramatic weight loss due to the inability to swallow.”

So you get tongue twitches? No big deal. Did you read what he said? ...”tongue fasciculations are NOT the presenting symptom unless they are accompanied by markedly slurred or even absent speech, difficulty moving the tongue due to atrophy and weakness, and profound difficulty swallowing.” Do you have any of those symptoms along with your tongue twitching? No. Not that I’ve read from any of you...

“There exists a condition of benign fasciculations, or muscle twitches. It can occur without a knowledge of what induced them or in about 30% they follow a viral illness. They cause not physical damage, but psychologically they can be un-nerving (no pun intended). The can reoccur, they are increased by anxiety or fatigue. They occur in an uncommon disease ALS. However, in ALS there is always muscle weakness and loss associated with fasciculations. If you have no muscle weakness with loss of muscle you do not have ALS.”

See what he said? “...in ALS there is always muscle weakness and loss associated with fasciculations”. “If you have no muscle weakness with loss of muscle you do not have ALS.” ‘Nuff said???

“When people who know about ALS have twitches in the muscles, obviously a concern is whether they have ALS. First, twitching of the muscles is quite nonspecific - some people describe tremors as a muscle twitching; others describe small limb jerking as twitches. But provided only a small part of the muscle twitches, probably the two things that come to mind are fasciculations (as are seen in ALS) and myokymia (which is seen in some conditions but most often around the eyelid when tire or after too much caffeine). If your twitches are becoming more widespread or frequent, you need to see a neurologist for visual characterization of these twitches and perhaps an EMG, which is an electrical test on the nerves and muscles which can characterze muscle activity better. So go and get them evaluated, but here's some things to remember - First, although fasciculations are quite common in ALS, it is UNCOMMON to see them without any other problem - leg or arm weakness, problems speaking and swallowing. Also other things can cause fascicuations - in fact, there is a syndrome called "benign fasciculations" where people just have fasciculations and craps but never develop the symptoms of ALS.”

There it all is again in a nutshell.

“Twitching of muscles called "fasciculations" is a commonly discussed topic on this forum so besides this opinion, you'll want to search the Archive function on "Amyotrophic Lateral Sclerosis" for other opinions. Fasciculations are a common sign of ALS but typically appear with other symptoms of ALS such as weakness, muscle wasting, change in voice, and change in swallowing. If these twitches have been going on for eighteen months without any of these symptoms and with a normal EMG (which can pick up signs of nerve loss even before symptoms in the limbs), it seems highly unlikely that this is ALS. Fasciculations do not only appear in ALS. In fact, there is a syndrome called "Benign Fasciculation and Cramps" which is just that - benign - and often appears in young, healthy patients.”

“it seems highly unlikely that this is ALS”. There’s that first quote in action. Here it is again... “"I try not to say "always" or "never", especially when I'm making a comment on someone I've never seen."

“Sorry to hear about your twitching. I know that it can be real pain (literally and emotionally true also) as I have these bouts. There is always that little small voice in whatever small hole in our brains that tell us that we have the worst disease based on what we are feeling. It does sound like you have benign fasciculations. In ALS (as you already mentioned) one has painless fasciculations WITH detected muscle weakness. Yes, stress and fatigue can make the fasciculations much worse. This sort of entity feeds on itself in many ways. Good sleep habits, good diet, etc are the best we can offer.”

Just more support of everything we all say on here....

“ALS can present in a variety of ways. There is a bulbar form, distal form, proximal form, asymmetric type, etc. But, there is always muscle weakness.”

Did you see that? ...“there is ALWAYS muscle weakness.”

“I am sorry that your having these fasciculations. Without muscle weakness being demonstrated on neurological exam, a normal needle EMG exam, you do not have ALS. The muscle becomes dead in ALS and the EMG picks up fasciculations and fibrillations. A normal EMG tell you that the muscle is not dead. Once ALS is diagnosed, the average lifespan is disappointly short, 3-5 years. There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness. So, again, I do not think you have ALS, nor have we seen anyone with fasciculations and a normal EMG needle exam develop ALS.
Benign fasciculations are really bothersome and cause a great deal of anxiety (which makes them worse, by the way).”

“Without muscle weakness being demonstrated on neurological exam, a normal needle EMG exam, you do not have ALS.” Man, is that plain, simple and clear!

“You have had multiple examinations by many specialists, all of which have come back normal. At a year, you now still have just fasciculations with no weakness or muscle wasting. I understand how ALS can be concerning as it's a progressively disabling and fatal disease and you have one symptom that is part of the clinical features. But that's just it. It's only one feature that happens to occur in other disease states as well as normal people all the time. I think that it's time to put this behind you, for your sake and your family's.”

This sounds like a LOT of people on here. A YEAR later and STILL worried about something he doesn’t have! Don’t be this guy! Move-on! How much more positive data do you need before you can let-go? If you have NO weakness, NO atrophy, and a clean EMG, get on with life! You do not have ALS! It can’t get any more clear or simple than that!

“Fasciculations are spontaneous twitches of muscle fiber groups that indicate nonspecific irritability of the muscles or nerves supplying them. In and of themselves they mean nothing and do not indicate disease, unless accompanied by more serious neurological symptoms. Benign fasciculations and cramps syndrome is a harmless disorder where a person has such twitches more than others do.”

“...they mean nothing and do not indicate disease, unless accompanied by more serious neurological symptoms.” Is that clear enough?

“Sorry to hear about your twitching. When a source for muscle twitching (fasciculations) is unknown and multiple neurological testing has been found to be normal, we all these benign fasciculations. There is a group of people who twitch after a viral illness and also a group that just begin twitching. Some think that these two groups are linked and there is some sort of viral etiology. But the truth is that we just don't know. The twitching eventually goes away (some people have them for year(s)). Anxiety tends to make them worse. It is a "catch-22" in that the fasciculations may one very anxious and therefore the twitching becomes worse which makes the patient more anxious.... I imagine that pure anxiety might trigger twitches in some patients, only because when some patients receive benzodiazepines, the twitching reduces in frequency.”

Just some more info supporting all of what we keep saying here...

“One has muscle weakness with ALS. Fasciculations without muscle weakness is not in the differential of ALS.”

No.... really?

“By all the exclusions, it sounds that you have what are called benign fasciculations. These events are noted by fasciculations that come and go or can often be continuous. The fasciculations are usually made worse by fatigue, lack of sleep, and anxiety. They are not harbingers of ALS or other muscle disease. However, they are really psychologically draining. Watching your muscles twitch (fasciculate) is really bothersome. We have patients that have had these for years and some only a few days. It is very individual dependent. Some patients respond to low dose benzodiazepines, but many do not.”

Several facts here; 1) BFS twitches come and go.
2) sometimes they are continuous (hot spots).
3) They are made worse by fatigue, lack of sleep and anxiety (and also exertion, alcohol, etc.)
4) Watching you muscle twitch is “draining”... So Don’t DWELL on them!!!! 5) they have patients that have had them for years and some just for days. Every case is individual.
6) some respond to certain meds and some don’t. There is nothing that anyone has found that makes the twitches go away. if they did, it would be called a “cure”. Besides, the meds they are talking about, “benzo’s”, such as Ativan, Xanax, Valium, etc.... of course you won’t feel the twitches as much when you’re on those! Hello??? get drunk and you won’t notice them as much either, because your body is drugged-up and NUMB!! They don’t make the twitches go away, it’s just that you don’t NOTICE them because you are “high” and not as “alert“ as you were before you took the meds.

“Sorry to hear about your fasciculations. Good news is that since you have no real muscle weakness and your EMG is normal, the most likely etiology of your fasciculations, cramping, and anxiety is a condition called benign fasciculations. For the majority of cases we do not know what causes them. In about 30% of the cases it is viral in nature. But the other 70% we do not know. The things that make them worse are fatigue and anxiety. They can come and go, last for hours, days, or even years. We do not think they cause any lasting muscle damage. They are not associated with ALS down the line. Some treat with a benzodiazepam but many do not find relief with medication. Sorry, there is no real treatment. The psychological issues are the worst since we assume that it must be ALS but rest easy it is not ALS. I understand your condition as I get fasciculations myself.”

There he goes again, “...I try not to say "always" or "never"...” when he said, “the most likely etiology of your fasciculations, cramping, and anxiety is a condition called benign fasciculations.” He also said, “They can come and go, last for hours, days or even years.” “They are not associated with ALS down the line”. And again, he said sometimes benzo’s work, (because they make you numb and not as alert) but MANY do not find relief from meds at all. And, the doctor himself appears to have BFS.

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Postby Jenn311 on March 8th, 2004, 7:03 pm

Wow Arron,

Been busy in your spare time have ya? That took a lot of work, and will undoubtedly help reassure lots of people! Good on ya mate. Hope your recovery from your appendectomy is going smoothly!

Jen :wink:
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Postby John on March 8th, 2004, 9:20 pm

Thanks for the info and thanks for a headache ,and crossed eyes . I need an asprin after reading so much. :lol:

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Postby garym on March 9th, 2004, 12:39 am

Thanks Aaron,

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Postby jcavan4125 on March 9th, 2004, 9:01 am

Excellent Post Arron! I suggest it be made into a sticky so that the same issues don't have to be repeatedly addressed on the board! Thanks.
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Postby StayingAboveIt on March 13th, 2004, 6:15 pm

This should be required reading for every new member...

Wow...Thanks Aaron..
After reading all that, I am convinced that there is no way I have ALS.
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Postby tlotoxl on March 14th, 2004, 2:58 pm

Haha, I should stay away from even digests like that. My hypochondria is not rational and can thus not be reasoned with. Well, not easily, anyway. I'm not panicked about ALS anymore, mind you, but I still think I'm better off keeping it out of my mind. I still worry about PD and MS, but with them I have something of an acceptance -- if it happens, I will live with it as best I can as many others do every day -- but ALS is just to terrifying for me to even come to that kind of emotional compromise.

Anyway, it's still a much better resource than there was available on the net over two years ago when I first started to panic after my doctor said, 'we have to consider the possibility of ALS' before sending me to a neurologist (who cleared me).
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Postby Arron on March 15th, 2004, 11:35 am

I agree, ALS is pretty "final" with no light at the end of the tunnel, except for the light you might see once ALS does its thing to you.

MS, Parkinson's, etc, we can live with. Most cases of those are totally managable. Sure there are some cases that are really bad, but those are actually not as common as one's that are just "nuisance", but of course, the bad one's are the only one's we hear about. The reality of it is, they are not as scary as ALS and like I said, if MS or PD or whetever is what we had, so what? Live with them and move-on.

Our symptoms are so slow moving that it would be several decades before anything bad ever showed-up, and who's to say we would last that long anyway? Some people don't even make it several decades without any nasty diseases.

Go live life, do the things you like to do, visit with your family (or spend time avoiding them like I do :lol: ) and move-on. The info I posted above should clear anyone's mind on here that they do NOT have ALS, so quit worrying about something you don't have and get back to life as usual :-)
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