Is ALS really rare?

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Is ALS really rare?

Postby Guest on October 5th, 2005, 9:36 am

I know that 1-2 per 100,000 people develop ALS per year and that, roughly, 1 in 10,000 people are living with it at any given time.

These numbers seem to indicate that ALS is, in fact, rare -- but -- given the number of people I read about (2 people just died of it in a town next to where I live) it doesn't seem all that rare.

I still can't stop thinking that the twitching and pain I'm having is ALS.
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Postby wjjw on October 5th, 2005, 10:48 am

The incidence rate that you quote seems correct. If you look at the age adjusted rate, you might see something like 1/100,000 or less for people under 50. It increases with age, and you might see a rate of something like 8/100,000 in the 65-75 range. But to put it in perspective, realize that the primary brain tumor incidence is something like 15/100,000.

The incidence rate of cases that present with twitching alone would be even more rare. Even if you assumed that 10% of cases presented with twitching alone (it probably is NOT this high, I am just giving an example), then the incidence rate of cases that PRESENT IN THIS WAY would be something like 1 in 1 million people.

I have seen the BFS incidence rate estimated at 1/200. As an example, lets assume that the rate is even lower, say 1/1,000. Now, if there were 5,000 new cases of ALS in the United States each year, there would be a good chance that 5 of them could have BFS also (assuming they are not related, as the Mayo clinic study seemed to show). Just try to keep things in perspective.

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Re: Is ALS really rare?

Postby someone on October 5th, 2005, 1:05 pm

Anonymous wrote:I know that 1-2 per 100,000 people develop ALS per year and that, roughly, 1 in 10,000 people are living with it at any given time.

These numbers seem to indicate that ALS is, in fact, rare -- but -- given the number of people I read about (2 people just died of it in a town next to where I live) it doesn't seem all that rare.

I still can't stop thinking that the twitching and pain I'm having is ALS.


Yes, ALS is rare. I have talked about the same stuff you mention here, why can you always read about people with als in papers etc, with a friend of mine who is also a well respected neuro. He says pretty much all neuros are upset about this, but the press seems to like the drama thats involved with als, since its a brutal, fast progressiv disease. There are other diseases that are much more common and deadly that are more likely will kill you than ALS.
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Postby Alien Host on October 5th, 2005, 1:38 pm

DearGuest ...
You need to talks to someone about your anxiety over this.
Have you had an EMG, Neuro Exams and so on?

Published statistics about ALS are completely useless. Even if the odds were 999 in 1000 chance of aquiring it, you could still be the one person who does not. The fact one fact in statistics that is true is that your chance of winning LOTTO is very slim... call me if youi do though...
:lol:


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Postby wjjw on October 5th, 2005, 2:40 pm

I'm not sure that the statistics are totally useless. I guess epidemiologists need jobs too. Helped me put it in perspective anyway. And if the incidence was even 1% of 999/1000, you can bet your doctor would be administering an EMG while taking your temperature at your annual physical. :D
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Postby migolivas on October 5th, 2005, 3:29 pm

As a college professor, I run statistical analyses regularly.

Given the fact that ALS is very rare to begin with, that it almost never presents with fascics first, that I have now been twitching for several months with no weakness, and that I am relatively young, I calculate my probability of having it as about 1 chance in 10,000,000.

Knowing the statistics is reassuring. Unfortunately, it doesn't prevent me from developing anxiety from time to time about the fact that I COULD be that one.

At this stage, I really believe my battle is more a mental and emotional than physical. Fortunately, I now have more good days than bad, and the bad periods tend to be over more quickly as well.

Thanks again to all the board members that have helped me get to this point.
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Postby Alien Host on October 5th, 2005, 11:20 pm

migolivas wrote:Knowing the statistics is reassuring. Unfortunately, it doesn't prevent me from developing anxiety from time to time about the fact that I COULD be that one.


this is my point... statistics really never seem to help here because we are all worry warts.. Nobody says worry warts anymore.. where did I get that term from anyway..is it from the 70's?

all the best..
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Postby Chris_36 on October 6th, 2005, 5:22 pm

I've always read that a persons lifetime chances of getting ALS is 1 in 1,000. That dosnt seem so rare to me.
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Postby Guest on October 6th, 2005, 5:30 pm

ALS is NOT considered rare by any means. Around 6,000 people a year are dx with ALS which is far from rare. It occurs as often as MS does. 15-20 new cases are dx every day in the U.S. Dont mean to scare anyone, but facts are facts.
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Postby Ginlyn on October 6th, 2005, 6:08 pm

I would just like to pass on what my neuro told me, and what I've read in Principles of Neurology: ALS is not rare for a BRAIN disease, but is still rare considering you are much more likely to die from Heart Disease, Diabetes, Cancer, not to mention a car accident.

If you worry that you COULD be the one that dies from ALS, you may as well worry that you are one of the 100 people per year struck by lightning.

All I'm trying to say is don't get caught up in statistics. I'm willing to bet that you know more people personally with a heart condition or cancer than you ever will with ALS.

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Postby migolivas on October 6th, 2005, 6:10 pm

I guess it depends on how you define "rare". I offer the following statistical analysis to suggest that, at least for the vast majority of posters on this board, the likelihood of having it is indeed very rare.

Consider that the number of Americans diagnosed with ALS in a given year is roughly 1 - 2 out of every 100,000. To be conservative, lets take the higher number and say our odds of being diagnosed with ALS in a given year are about 0.002% (2 out of 100,000). Perhaps the medical community would not consider this "rare", but it is certainly not as widespread as something like BFS which as many as 2 in 10 people may experience (20.0%).

In addition, most (but not all) of us also have to consider the following:

Percent of ALS cases that present with twitching first: Most estimates are between 0% and 6%. Let's assume the high end of 5%.

Percent of people diagnosed with ALS in their 20s and 30s: Hard to find reliable numbers. Definitely looks to be less than 10%, but lets go ahead and assume it is 10%

Percent of people with the inherited form of ALS: 10% (most of us can exclude this from consideration), so we only need to consider 90% of the ALS cases to begin with.

If you include just these numbers in the analysis, that number moves from 0.002% (2 of 100,000) to 0.000009% (9 out of 100,000,000). This is roughly where I got my 1 chance out of 10,000,000 number.

If you further consider that each passing month further lessens the likelihood that ALS will develop in us, we all ought to be feeling pretty good about the fact that we are highly, highly unlikely to have this disease. The statistics say we are all almost definitely suffering from BFS.
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Postby wjjw on October 6th, 2005, 6:27 pm

Rare may not the right word. But it is NOT COMMON, and BFS IS COMMON. And if the above number of 1/1000 lifetime chance sounds bad, realize that there are serious malignancies that have a 1/8 lifetime chance! So just keep it in PERSPECTIVE, and don't obsess over ALS just because you are twitching. Take comfort in the posts of all the other BFS sufferers on this form, the research they have done, and the encouraging posts that they bring back from their neurologists telling you that twitching alone DOES NOT imply ALS.

Doug, you are absolutely right, statistics suck. :x
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Postby Guest on October 6th, 2005, 9:14 pm

I don't believe (although I've read many times) that ALS is as prevalent as MS. The "prevalence" of MS is something like 1 in 700 .. while the prevalence of ALS (not incidence or lifetime risk) is something like 1 in 10,000.

Also -- 15-20 cases a day sounds like a lot .. but .. consider that this is COUNTRY wide. That doesn't even equal 1 person per state per day. Hence, every 3-4 days ONE person in Massachusetts (for example -- GO Red Sox!!) is diagnosed with ALS.

Furthermore .. consider that 1,500 people A DAY die from cancer in the US.

So .. sure .. some of these numbers make ALS seem somewhat common, but, taken in perspective, it is still a VERY uncommon disease.
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Postby Guest on October 7th, 2005, 12:06 am

The prevelance rate of ALS would be very small because people die from ALS. Prevelance refers to the number of people currently living with the desease at any givin time. So the prevelance rate of MS would be MUCH higher because MS is not terminal.
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Postby smnbfstoo on October 7th, 2005, 8:31 am

Keep the statistics in perspective. For example 1 in 6 men are diagnosed each year with prostate cancer and 1 in 9 women with breast cancer. Consider those kinds of statistics when comparing the incidence rates of ALS. Also, consider the statistics everytime you get into your car to drive each day, each and every time, the chances of getting into an accident. I am not trying to preach or anything, but just trying to bring everyone back down into the reality of the statistics. This is not to scare people into worrying about all these other things now also, but merely to bring things into perspective when talking about the rarity of this disease.

Believe me, I am one of many who have good days and bad days and always try and tell myself these things. I had a scare last year with a mammogram and I truly believe that was the start of all of my BFS triggers.
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