Chances of getting ALS in the 20's

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danielito

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Learn about ALS
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SH
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C
Hi everybody,

I would like to ask you about the statistics. Anybody knows the canches of getting ALS if you are in your 20's. I read here: http://www.amyotrophiclateralsclerosis.org/ that the chances are really low if you are below 38, but anyway, they present this statistics as an example more than a fact.

They say the average age is over 60 in most of the studies, and the standard deviation is about 10 years, meainig it that the number of people getting ALS below 38 and above 92 represent only the 0,03%. They do write that ALS has not enterely normal age distribution and the number of people in their 30's with ALS could be much higher.

I also read some statistics about USA, and they showed based in the mortality rate, that the number of people suffering of MND between 1989-1998 were 44373, from which 474 were in ages below 35. Making a simple three rule calculation, it is about 1% (http://www.atsdr.cdc.gov/NEWS/alsreport.html).

Does anybody knows better approaches to the real age distribution of ALS?

Thanks
 
Interesting reading, they still don't have a clue!
 
I can't attest to any of the statistics out there, but I'm 28, diagnosed at age 27. I was told early on that it was real unusual but in doing more readings and talking with my neurologist, I don't think it's as uncommon as originally thought. In fact, there is a type of ALS - "ALS 4" - that is actually called juvenile-onset with onset being generally before age 25. My neurologist has had patients my age and younger, one as young as 16 with the diagnosis. I think that with more research and more testing/diagnostic capabilities, many people under 60 who would have previously been lumped into an unknown category for diagnosis are fianlly being given a real diagnosis. I think as more data is collected, we'll find that it isn't as age discriminatory as we think.
 
danielito,

I imagine your goal is to help reassure yourself that your chances of having ALS at your age are slim. No matter how you dice the numbers, since you are dealing with the subset of a population with a relatively rare disease, the overall probability is low. As joelc and elemkay80 have indicated the medical community still has its work cut out in terms of piecing it all together.

I guess my thought is rather than focus on statistical analysis and disease prevalence, you should focus on your own medical history and medical examinations for your reassurance. Whether one person dies from cancer every year or 10 million would not change whether or not a person has a tumor at any given point in time. It's either there or its not.

Worrying about whether ALS has a normal, skewed, or even bimodal age distribution seems like a stressful excercise in murky waters. I think there is an easier way for you to find the comfort you need.

Best wishes,

Robert
 
Thanks everybody for the answer!

Planningguy, you are right, I am trying to measure my possibilities to have it. I am quite nervous, you can read my previous post and you will see it.

Elemkay80, I hope all the best for you. Actually, and I found you blog in google and I am reading it at the mommet. Very interesting, very human. We are all hoping that in the very next future the science will find a way to slow down and finally stopt this condition.

I went to a home doctor two times explaining my worries, two different doctors. The first made a almost complet neurological examination, out of basinsky reflex, and everything fine. The other look at my hands, where I am worry to have muscle dystrophy, and told me I have all the muscle in place. Both told me I do not need go to a neuro. My only real symtoms are fasciculations all over my body (calves to eye, hands, fingers, arms, even in the ass and sorry for the word), ramdom, not hot spot, very short normally, not too frequent, usually in muscles at rest (99%). I also think I have ever had fasciculations, but now I am too nervous that I cannot tell it for true. I just notice it really when I read the symtoms of ALS when searching information about Multiple Sclerosis, because my girlfriend is in the diagnosys process for it (MS). Out of that, I only notice some loss of support with my left knee sometimes when walking, but I remember to have had it since long ago (not sure now, I am too nervous)...

But despite the two doctors told me everything is ok, I do not stop looking at my hands, proving my ability to use the fingers in weird ways.. I sound crazy.. I know. The doctors also given to me some medicine for anxiety, but it does not help that much.

Sorry for disturb you,

Daniel
 
"...The first made a almost complet neurological examination, out of basinsky reflex, and everything fine"
I mean I do not have basinsky.
 
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