Age of Users on this board with symptoms/problems...

[aobrien]

Just curious...

Any theories as to why so many on this board are under the age of 35? We are told the incidence of ALS before the age of 40 is about 1:1,000,000, yet there are several on this board much younger than 40.

Is it because the average age of internet users is around 35? Meaning younger people tend to use the internet more as a resource for information and help. Or is it because the age statistics regarding ALS are incorrect?

 

[awieleba]

Hey, could you make the cut off 36 yrs old to include me? LOL, I think of 35 as the new 25!

I think there is just more and more people getting these type symptoms earlier (not sure if als or some variant) due to the enviroment and everything we are exposed to. 50 yrs ago people were not as exposed to as many vaccines, pesticides (our yards gotto look good), growth hormones in our food supply, toxic subtances, pollution......you get it. and if we have a weakend immunes system or predispostion, then you get it. Also, I think younger people go to the doctor sooner and dont dismiss things as getting older or age. I cant either of parents to a doctor, they say its just age. So, I believe (alot dont) that you CAN go to the doctor to soon. And if we had symptoms on and off for a few more years, we would be 40. Alot of people on here that have a slower progression had some sort of issue's prior and not know or think it was related. It takes along time for some to get a diagnosed. I have been online and I have seen alot of young people get this, so I dont think or know if those numbers have been updated?

I think the question is right up there with why is Autism effecting 1 in 150 kids? It is more prevelent than downs syndrome or any other child disease at the moment. IT is scary for parents, something is causing it and I know alot of people effected by this. They *think* vaccines or ultrasounds to food allergies to you name it. The occurance has only went up in the us and middle class families. I wont get into this debate as I have done alot of research and my nieghbor goes to conferences. This was what I studied about before I got sick. I am still nervous and not out of the woods with my 11 month girl. Very scary to get her vaccines and I spread them apart and break them up and request to see the bottle to check for thimersal. anyway..

I was also reading that in US we have the highest autoimmune disorders....

Just my opionion, I have no diagnosed, I am not doctor, or teacher!

 

[tomjstones]

Well Im 24.

I believe I have had ALS for a few years but only recently have picked up truely rapidly progressing symptoms. I am an athlete and have a history of pushing my body to its limit. Despite fatigue, despite illness, despite anything I was feeling - excercise was the remedy.

In reality I think I was causing damage. My right leg began to get weaker than my left - something I didnt realise until recently. I was experiencing knee joint pain and put it down to over use. I now dont think it was but that my symptoms were probably very slowly progressing back then. Until last month I was hillodaying in France and took a few serious blows whilst surfing and since then my symptoms have stept up a few gears.

I have fascics everywhere, Im losing the lining on my tongue and my right hand and foot are cramping. i realise now that the weakness in my right leg is worse and the joint issues were coming mainly from my weak quad muscle on that leg. Infact all my joints click and ache now.

Either way Im a bit down right now... I was looking forward to so much stuff. I was going to propose next week and you know I was really looking at house kids and career.

Now Im a bit confused about where to look...its like God is pointing directly at me and saying "Oh no you dont".

 

[CB1977]

Hey Tomjstones- I 100% completely know how you feel and know what you mean. There are several people on this site, Obrien, Skydogg, you and others that are all around 32 years old, athletes and work out fanatics, that seem to be coming down with these ALS like symptoms. For the past 5 years I have been serious about taking anti-oxidant vitamins, eat good, work out hard, and I feel like...for what? I have a great life, a great wife, the car I have always wanted, just starting to work on building my family, and the job of my dreams. I AM LIVING THE DREAM. I seriously am 100% content with my life. There is just so much that I have not experienced. There can not be this many people in their 30's that are getting this, it is not consistant with the odds. I actually had this exact converation with my wife last night.

Let me ask you guys something- What sports enhancing supplements have you taken in the last 3 years? NO explode, Creatine, Ripped Fuel? I AM NOT saying this stuff causes ALS, but maybe something we are all doing is causing ALS like symptoms?

CB in Ohio

 

[tomjstones]

Hey CB

I dont generally take supplements. I think I drink alot of lucozade and I have the odd (only about 3 or 4 ever) Protein shake...I can get the exact name for you in the next few days.

To be honest it is possible that it is lifestyle driven as oppose to a drug or anything taken.

One thing I had started to do is to use the sauna alot at my local gym - I mean like 4 times a week. I liked the way I felt after it and I see now that the whole boiling hot - jumping into ice cold repeatedly all week could easily cause nerve damage.

Apart from that - what sort of sports do you do? Anything where you receive knocks etc? If you notice there are a huge number of Italian Footballers coming down with strange ALS like illnesses - well what is ALS basicly but its far more common amongst them than among the general population. just Google Italian footballers ALS.

There is a connection Im sure.

 

[jennibf]

I am 41, almost 42, where did time go? ;-)

 

[wright]

Tomjstone

There is not ONE BIT OF EVIDENCE you have ALS. NOT ONE! Stop saying you have ALS when you haven't been diagnosed because it's going to scare already scared people on here when they see your symptoms . . . compare them to their symptoms . . . and then think they have ALS too. Your symptoms . . . their progression . . . etc . . . are not typical of ALS. Please tell me how you came-up with your self-diagnosis . . . and that's not a rhetorical question . . . I want to know.

Here's my story:

I was an athlete all of my life, including college. I continued to work-out and competed in powerlifting meets and dabbled in body building. I bet I've pushed my body beyond what you have. I have taken supplements and still do. I have muscle atrophy . . . real muscle atrophy in about a dozen muscles of my upper body . . . . along with weakness. I also have some weakness in my legs. I also have fasics. All of that is waaaay more than what you have and I DON'T HAVE ALS! I didn't come-up with that diagnosis by the way . . . my neuro did.

So once again, please enlighten me as to how you came-up with your dire diagnosis?

I'm losing patience and I know there are a lot of other people on here who are losing patience as well . . . people who really do have ALS or are on their way to getting a diagnosis because they truly have ALS symptoms . . . people who actually see a neuro and go through the diagnostic process.


Aobrien

Sorry I hijacked your thread. My opinion on your question: I'm not sure if the statistics have to be re-done about age and ALS. My guess for now is, that younger people use the internet, which might explain the younger people on this forum. Google is another one that has caused more people to be scared of having ALS and have brought them here . . . and again . . . younger people tend to use the internet.

One other thing: the 1 in a million chance you quoted is for people under the age of 30 (not 40).

 

[BethU]

I, too, have wondered why so "many" (four or five?) people on this forum who do not have ALS symptoms seem to think they have ALS anyway. Interestingly, they seem to be also involved in extreme exercising, body building, etc.

My hunches:
1) The statistics for actual ALS cases are correct.

2) Guys (and women) who are involved in body building and/or intense exercising are probably more body aware than the average couch potato, and so every dent or quiver in their silhouette looms large.

3) PERHAPS the urge to exercise excessively reflects some kind of body anxiety that is already there ... something like anorexia or bulimia in young women. Some need to achieve an idealized form and to have total control over one's body. (Don't want to get psycholanalytical on you, but there seems to be a "control" issue underlying the irrational fear of ALS. ALS is the ultimate "loss of control over one's body," and therefore seems to represent an irrational threat to some people, even those who do not have ALS symptoms.)

4) Perhaps excessive exercising leads to the kind of global twitching people report. Muscles were not designed by nature to be bulked up for no purpose other than bulking them up. This kind of twitching may simply represent over-stimulation of the muscles, combined with anxiety. (Remember I know nothing about this stuff, so take it for what it's worth. )

5) Finally ... having a guy in Ohio, a guy in the UK, a guy in Canada, and a guy in the northwest (or where ever) meet up on an internet forum does not constitute a "cluster." What are the commonalities? You're exercise enthusiasts. You have twitches or other symptoms that are not characteristic of ALS. Yet you are all convinced that you do have ALS.

My hunch is that there is some other anxiety that this ALS obsession is masking. But then, I live in La-La-Land, and we go for weird theories here. I'm sure Wright or Al or others will have the correct explanation.

You all sound like great guys ... smart, nice people. Hope you get some relief from your worries soon, i.e., find the correct solution to your symptoms and accept the answers you're given by professionals.

Good luck!

 

[CB1977]

Wright- You are the straight talk express man! He might not have ALS, but he might have something and he is just scared and like you said, that can cause people to be irrational. Please be patient with people and don’t give up on them, they look to you on this site to ease their mind. You are changing lives Wright in a positive way, that’s pretty cool when you think about it. You have certainly talked me down. I think most people come on this site to find out what they could have instead of ALS, not to find out if they have ALS.

It does seem that many people coming on here talking about strange symptoms are athletes that are younger. I am sure that 99% of them Dont have ALS, but they do have something. Do you think there is any significance in that?

Tom- I was a varsity soccer player. In more recent years (last 5) I have lifted weights, run, and play softball and flag football but I am the QB for flag football and rarely have any significant contact. I havnt played soccer in 11 years.

 

[rose]

Ditto to everything that BethU just said.



Since first posting this response, I've read several other very logical replies, from Wright, Jeff and Gordon. Try your best to listen to the voices of reason

 

[aobrien]

tomjstones -

Why are you convinced you have ALS?

 

[L4dybugg]

My Husbands first cousin that did have ALS, he died from it at the age of 34.

'IF' my husband has it, he is 41.

 

[gbrown]

Google Heads?

I somewhat agree with Wright. the internet and Google-type search engines are great but they are also sometimes a bane. When someone "Googles" muscle spasms or such, one of the first things that comes up is ALS. The person is then sure they have ALS. These people need to get medical help before self-diagnosing themselves and worrying and stressing themselves out which is almost as bad as having a disease.

When I was going thru my diagnosed. process for almost 5 years, I did not search the internet for anything related to my problems. I didn't want anything to influence my thinking about my problems until I had the proper diagnosed. and everybody (including me) was sure.
Since then, I have read everything I can get my hands on about ALS and any related diseases. After all, what else do I have to do? I spend several hours each day reading forums like this one. I love to find out what other PALS and CALS are doing and have picked up several helpful hints from them.

So, please don't self-diaganose yourself. Let the ALS professional do it.
Gordon

 

[ZenArcher]

I'll venture a few guesses at this one. First look at two things. What is the average age of people on this board who have been diagnosed with ALS and what is the average age of those who think they have ALS? I don't have access to the data but I'm willing to bet that those diagnosed will end up in the mid to late 50's for an average will those that think they have ALS will end up in the late 20's.

The question is why the discrepancy? Here's my idea. ALS is seen predominately in persons over the age of 50. Although it can and does happen at younger ages the likelihood decreases the younger you are. This would easily explain the average of those diagnosed being in the 50's. So then, what about the rest? First off I'm not judging just guessing so take it for what its worth. Doing a search for twitching brings up all sorts of things. Sooner or later someone is going to stumble across ALS and when they do, ALSforums. Now once they get here they start reading about all these people that think they have ALS although they have no diagnosis and the majority are only twitching and their mind races.

There are quite a few people who have posted thinking they have ALS and quite a few have no evidence and little to no symptomology related to ALS. They read about the disease, get scared and the mind does the rest.

 

[ladyk]

This has all been such a fascinating read for me!

I have been swollen in the sternum, twitching pretty much everywhere in a transient fashion but concentrated in the upper left body. I have severe numbness in my right leg or left arm every few days, horrific pain and spasms in back and shoulders, I get migraines straight from h---, fall over occasionally... All but the migraines started suddenly one day (a yr and 1/2 ago)whilst working out. I'm 46 (for a few more days) and have been fit to the extreme, dancer, performing arts high school, weight lifting, a little body building....trainer back in the 80's. I did a lot of not eating properly and supplements, and in the 80s some recreational drugs, worked with toxic chemical for a few years, smoked for 30 years (duh)even though I was fitness oriented. My philosophy on this workout to wierd symptom thing is that there is a connection to some disease, probably as yet to be discovered. There's so much complexity in the function the human body that it's almost unthinkable that it's all figured out already. I actually had a neuro tell me last Fri that it was clearly obvious that something was wrong by looking at me but all my tests so far are normal! I am having EMG in a few weeks, starting at pain management with physical therapy and taking it from there. I was told that the twitching muscles can't be tested with the EMG because it would probably puncture a lung. I thank you all for sharing your stories because at least we can have each other for support until it's figured out or diagnosed. Whenever I have a really bad day (like today) where I can barely move and twitching like mad, I log on and am grateful to all of you. Peace :mrgreen:Karen