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jethro

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Joined
Nov 2, 2017
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457
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
Since theres no drug to cure als, even make plateau, reversal i dont even want to mention, since theres no known cause for it, - why do young and old people could be in a same pair of shoes, did anyone try to COMPLETELY change way of living? i dont think just of food, excercise etc, but did anyone leave place of living, changed town, state, continent, gone to live in (not neccessary) exotic place leaving all problems, friends/enemy and stress behind him? i know, many of us dont have conditions for such a "venture", according to money, physical condition etc...
if yes, can you share experiences? i did (i had a plain which seems to be realized), but it is to early to say anything...
 
Unfortunately, there is so little known about cause that changing lifestyle or diet may be useless. Genetic disposition to the cause may have been triggered by an exposure ten years or even twenty years ago, something you stopped years ago. Like all of us, you wonder what the cause is, but searching for it is fruitless. I think of it as one of the stages of grieving we all go through after diagnosis.
 
@tedstehr
totaly agree with you. nobody knows when and why his/her als started, but medicine is still claiming that expected lifespan is 3-5 years... in my hospital, there are two people suffering from als. one was born 1938 and has it for 15 years, upper limb onset, woman in late 50es has it for 10 years, leg onset.
 
I lead a very healthy lifestyle prior to ALS. I did change a few things and they were to start a supplement regimen, cut out inflammatory foods (dairy is one) and move near the ocean.
 
@kim
in my hospital, came man with diagnose "unspecified neuromuscular disease". i saw his history, and it is written that he is suffering from "und" since 2009. doc said that he suffers too long, so als is excluded. clinicaly, has no calfs, general weakness, lost muscles all over his body, tenar doesnt exists on both hands, all things like real ALS affected. you can, as i remember, stand on toes and heels, even walk on them. believe me, your als in my country wil have question mark in brackets.

dont believe it is something from outside, it is something from within - reaction on external things, so i wander what will be if we will (by medical assistance) fall in clinical coma, electricaly maintain muscles for a half year and get all antioxidans and nutrition that our body needs...
i submited such idea as a volunteer to clinic, but they said that they dont have protocol for such "project", even i wanted to pay everything, all expences with all legal things included.
it is kind of leaving a world, problems, stress and everything that might be cause. many things will be much clearer when i wake up after 6 months.
at least, i would die for that experiment which nobody did and i was ready, financially, mentally, emotionally and from all other aspects. after that experiment, we will know if ALS is mechanism which is triggered, or it is like avalanche. i dont think that it is triggered, cause there are many people retain their status as plateau.
english is not my motherlanguage, but i hope i was clear.
 
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Maybe I can help answer your question. I'll try. Maybe this will help.

Many American military soldiers have ALS. ALS happens to soldiers more than most people.

I say this because soldiers move a lot. Their lives change completely a lot. They are very healthy and young and strong, and they are exposed to many diseases, many injuries, and many chemicals. They move from Europe to America to the Middle East to the Pacific Rim to America very quickly, changing home every couple of years. They change jobs often, from office work to working in the jungle, to high stress jobs, to easy jobs. They get married. They leave the Army and go to college. Or they leave the Army to work hard jobs.

American soldiers are from many different types: White European families and Black African families and Philippines and England and Canada and German. We have many different kinds of blood and DNA in our Army. But we still get ALS.

My point is that many people with ALS have changed their complete lives, but they still have ALS.

I hope this helps you understand something about ALS to help answer your question.
 
Unfortunately. in my observations with 5 neurologists, they eliminate all other diagnosis and then say "if it isn't any of those.... then it must be ALS..."
 
Jethro,

ALS has many variants - think of it as a group of diseases with similar causes and similar results. Variants of the disease can have different life expectancy. From a non-medical guessing angle, I think the man you are speaking of has a lower motor neuron dominant version of the disease. Upper or lower motor neuron dominance has longer life expectancy.
 
I read a book by a pastor who had ALS. He lived 15 years after diagnosis. He worked for the first five or so years.

We don't know why some have slow progression and others do not. There is a guy in my support group who got diagnosed in 2012. He is still walking, using a cane or walker. He still drives. He is a veteran. He almost died two years ago from a heart attack. After that he lost 50 pounds which reversed his Type 2 diabetes.

I think stem cells will be the eventual answer, at least for some variants. I think FALS will be the first to get effective treatment.
 
@atsugi, probably i wasnt clear. i do not think of why people get als, but what they are supposed to do when they became aware of fact that they have it. i think that percentage of pals which are in military service is higher by chance. there are three kinds of lies: ordinary lie, dirty lie and statistics. i was in war, not just pasive in military service. i got ak47, 60 bullets and i've been told: you're on your own. as you can read, i survived. in my country percentage of soldiers with als is lower than it is presented in media. i know two ladies, friends and coleagues, worked in a same company, both suffered from als, both passed away. weird? they were in sarajevo. bosnia and hecegovina, republic, has totaly 35 pals. diagnosed, missdiagnosed and undiagnosed, god knows. in a (town) place in bosnia which has 46000 people, there are 12 pals or more...
@romeosc your case tells that als is in fact the big umbrella, which hides bunch of diseases that have same mechanism, attack same things and look the same. now we can try to differ field called als. is it something wrong with metabolism of carbohydrates that cause damage of mytochondria in neurons, lypoprotein involucre is damaged so whole motor neuron is affected, something third or thirtythird, god knows. i strongly believe that ALS in medical vocabulary will disappear and it will be divided into many diseases as soon as medicine find out something radically. hence, als is nothing but bunch of very simmilar diseases. als is diagnosed by negative sellection, so it is called "professional charlatanism". i can not believe that 100 pals have 100 clinical signs and that is about one disease. that is why is impossible to find one pill for all diseases. here immunity plays main role, cause it doesnt ask "who attacks my body?", but sharpen its spears and swords to deffend it. term ALS is used as medical impotency to describe or reveal mechanism of such diseases. i belive in inner cure, i.e. stem cells. some people live 3 years, some 20. same disease? i dont believe. you can say "everyone is different", but i will say "every disease is different, except some who look almost the same."
when you have high temperature, it can be million diseases. this is simplified.
@tedstehr i wrote almost the same you wrote in one sentence, but my comp got frozen while i wrote. in a meantime you posted. sigature to every your word.
 
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