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nachiketg

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Jul 18, 2010
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Learn about ALS
Country
IN
State
Maharashtra
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Thane
What causes ALS ? Lot of research is going on. There is no specific cause pin-pointed yet.

Genetics, exposure to substances, trauma, toxicity, smoking, medication and what not. All must have been considered by the masters in this field. We know that there is no cure for it, and that implies that specific cause is not completely known.

Usually the research in this field would be based on patient study, animal models and available follow up data of patients at a particular medical establishment.

Has there been an attempt made on this beautiful forum to collect historical data for all friends here living with ALS.?

Not just sharing of experiences, but a standard data collection of related and seemingly unrelated information of those with ALS.

Thousands of ALS sufferers being together here is itself the strength that can't lie unutilized for research.

It was seen that soccer players have unbelievably high incidence of ALS that probably defies statistics.

There has been epidemic like occurrance of ALS in Guam.

There are geographical areas where ALS is multiple fold more common than rest of the world.

If not done before, can we come together to build strong data of past history of ALS PALS here ?

It may be the various drugs we have been taking since childhood, whichever we can remember. (Of course, lot of general population takes paracetamol and dont get ALS. But probably if you have taken plasma transfusion, or some relatively uncommon medicinal substance..?)

Any exposures that are uncommon.

Geographical areas you visited.

Infections you contracted acutely or chronically in the past.

Any trauma since the early age.

Some uncommon event in our lives which sounds insignificant to us may be found common in ALS sufferer's past history. Doctors do take detailed medical history, but its not possible for him to get so called insignificant pieces of information from your entire life.

We have time for that here..


With large number of people contributing with information, it may be compiled and sent to research organizations to find out any unseen comman factors that may direct to the reason of ALS.

Is it possible?

If I make such a template (or even better, any senior member or medical professional makes a template) to be filled by members of this forum, will it be a step towards finding out the unknown?

The template may not necessarily be limited to few options, if member wishes, they may write anything else that is not covered.

Won't it be of great significance if a common thread can be found in most of the ALS patients...?

Just feel that the forum should do such activity. If it's already done, I am sorry to waste your time. I am new to this place and don't know much about it yet..
 
Too much sex!.......really, I think most will agree..you can drive yourself crazy trying to figure it out. I'm sure everybody here researched it to death! You will just end up very frustrated! Finding the cause might not be that important towards finding the cure. It might tell us how to avoid it at best IMHO. There doesn't seem to be any pattern at all. Lets say you think its exposer to aluminum...that still would not explain how it is passed on through the genes in Fals. That would almost make you think that you don't "catch" ALS. ALS can make you feel really helpless. All we can do is work on the quality of life IMHO.
 
Phil,

It's not about self research for reasons on internet.

It's about finding comman points in all.

And in hypothetical situation, if the cause is known, there are thousand folds more chances to find solution.

Extending your example, if collection of experiences "surely and clearly finds out" that it IS "exposure to aluminum" (Not what I think..) then there is some chance that something can be done at all stages of disease. We still don't know what is the cause.

Its so much natural going crazy by doing individual research..

It was my honest attempt to do something for good.

However, I appreciate your personal views.

N.
 
Phil,

It's not about self research for reasons on internet.

It's about finding comman points in all.

And in hypothetical situation, if the cause is known, there are thousand folds more chances to find solution.

Extending your example, if collection of experiences "surely and clearly finds out" that it IS "exposure to aluminum" (Not what I think..) then there is some chance that something can be done at all stages of disease. We still don't know what is the cause.

Its so much natural going crazy by doing individual research..

It was my honest attempt to do something for good.

However, I appreciate your personal views.

N.

If you dig, I'm pretty sure there are already a couple threads asking the same thing. I'm just saying that it can really tic a person off! There just seems to be no rhyme or reason. For me personally. I thought of Lyme disease, and I have had a neck injury for years that never seemed to get better, and thats the same area my ALS started (bulbar). The fact that military is twice as likely to get als. Would make one think, that would be a good place to start. Good luck!
 
I don't know what causes als but I do know very few doctors know anything about it. I have my own personal thoughts on it and feel it is bacterial.

The odds of having als is high.

So I want someone to explain to me why the 70ishyear old guy to the east of me 30 miles. The 70ish year old guy to the north of me 5 miles. The 40ish year old guy north east of me 20 miles and the lady 60ish to the west of me 12 miles. including myself have all been diagnosed with als within the last few years. We all live in rural area's low populations so why is the als rate so high?

Also my left knee hurt for years told torn minicus had cortisone shots for years. Amazing that my als caused left footdrop and now my left knee no longer hurts and no shots were needed.
 
I think your idea is good, but redundant.
 
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Serenade,

Knee pain appears to be common in pre als history.

Thank you so much for your comment.

Warm wishes.

N.
 
Thanks Erica. Will do that.
N.
 
i have been saying exactly the same thing, Nachiketg. Take a look at this thread: https://www.alsforums.com/forum/event-announcements/12405-petition.html

I feel this is the ideal place with thousands of us who might just be able to pinpoint an unexpected link. what is happening on patientslike me is not the same.

BUT I came out ofhospital just today an they told me research is coming down more an more on the evidence of pesticide cause
 
Hi Irismarie,

Yes, I was wondering why someone has not done this before. I knew that my idea would be redundant.

Great post by you. Hope people respond. General opinion appears to be that this wont work.

N.
 
i have tried before, dear N. It just does not get off the ground
 
That's okay. At least I got to know you and more friends here.

May be too much thinking and research done on "Why I got it?" in the initial stages brings the withdrwal from digging into it again and again.

I realized that I can't even imagine what goes on in the mind and body of one who is suffering ALS. I am not ALS sufferer and I will always try to understand my friends here. I am not here for sympathy or solutions. I am here for company of friends.

Keep in touch.

N.
 
The fact that ALS can be inherited in some cases really throws a wrench into any investigation. How can it be a disease that you can catch, when it can also be inherited? That really changes things...
 
nachiketg - I agree. Data needs to be collected in the "hot spots". I think we have one here. My husband is 49, graduated from H.S. in 79. He attended a small boys school (class of 100) Another guy from the class of 76 has it. 2 guys from the class of 80 died within the last 5 years. 2 guys from class of 79 at another boys school around the corner died this year. 3 more guys from the class of 79,80 and 81 have it. That is 9 guys from this immediate are, same age range, that have or had ALS. It certainly is out of the ballpark in terms of statistics. Seems worthy of some research.
 
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