To those with ALS, what do you think was the cause?

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ottawa girl

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I do not mean to be rude but I'm not entirely sure why you are gathering testimonials. What we "think" does no meet the rigors of scientific scrutiny so I cannot see how it informs the discussion of causes of ALS.

I so agree with you. I suggested that " just a guy" reads previous threads on the subject or that he scours the Internet for the answers he seeks. Thanks so much for putting it more succinctly than I had deigned to do.
 

crosado8

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My husband has bulbar ALS he was diagnosed in March 2012 and by July 2012 he was put on the vent. Right now the only thing he can move is his eyes! You ask what we think might cause ALS I personally think "medications" especially ones for depression and psychotic ones. I think thats what caused my husbands I know that he was fine until the medications he was started on for depression especially the Effexor and Celexa the doctor cold turkey his Effexor and started right off the bat 40 mgs of Celexa well after 1 month of the sudden stop of EFFexor and taking 40 mgs of Celexa my husband started weight loss/Spasticity/Non stop twitching/Voice change/ PBA/ falling/weakness in hands/ paralyzes /etc. He was fine until the change and increase in his depression meds! The doctor did not want to hear me about how it happened and that the meds have every symptom of side affects that ALS has! The hospital VA where my husband is right now they look at him terminal/already dead and he is NOT but because of his diagnoses they do NOT want to do ANYTHING for him! I have involved congressman! He is on a trachea/ vent and his body is so wasted away. This is the most hideous disease there is and one that they are still a very very long ways away finding a treatment or cure! I was thinking also that the first case was like 140 years ago Lou Gehrig Died: June 2, 1941 (aged 37) here it is 2013 and they don't even as much as have a treatment! Now it would make sense to me that someone would be seeing what they had 140 years ago that still exist today? Like I'm sure there was no serious depression meds then or gas cars or pesticides would you think? We need to dig back 140 years! Because that was the very first case so it would seem if we can find a common denominator back 140 years ago and that still exists today! He was a baseball player could it be exercise -running- accidents -injuries DIET? Thats my opinion or at least my thoughts and theory . I think it great to share what we think is the cause just maybe someone will hit this demon on the nose and lives can be saved! Since no one knows what causes then no one knows what will stop the progression or reverse it! So sharing our stories and what led up to the symptoms may shed some light! Blessings Carolyn
 

Mohan

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I think you should have a theory on anything that interests or matters to you. This theory gets modified with more information or experience. This aids the process of undrstanding/ development.

Mohan
 

vickim

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I think all horrible diseases have been around forever, we just did not have a name for them that we recognize. In the past they were considered "fits", "maladies", and "evil posession". I am sure there are other old names they gave but I can;t think of them now. ONly as we gain in knowledge can we give names and find ways to fight it, we have come a long way since leeches and blood letting. It may not be in my life time but there is always hope. Peace to all.
 

Syekick

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I spent about a month wondering the same thing and finally realized I was wasting my time. I have better things to do with the life I have rather than wonder about why I have ALS, what caused it, how long I will last. I just don't care.

Wheelchair bound now. I have today and it is a wonderful fun filled day. If I wake up in the morning I have another day. I focus on enjoying every day. Bird watching, computer gaming, holding hands with my wife, watching the grandkids when they are around, (I can't run around and play with them anymore.) Enjoying the love around me, the beauty I see, and for now, the places we can go are all that are important. All that matters is I have right now.

I hope you move on through the stages and decide to enjoy the day rather than ponder questions. Hugs!
 

ottawa girl

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Thanks Joe. My sentiments exactly. (Tried adding to your rep... But got message that I need to spread it around! ha!)


Don't care why I have it. Just gonna LIVE with it.

Call me naive, but I'm gonna let scientists and doctors figure it out. And, I believe they will. Soon.
 

hopeangel66

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i feel mine is of hereditay derivation . my grndmother had it. but why did it skip a whole generation. my sister didn't get it. will my children ? or will it skip a gen. should go get the SOD blood work done for hereditary proof i guess.
 

Tham

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Looks like an iatrogenic case.

Celexa being an SSRI, and Effexor, a potent SNRI, must have messed
up your husband's serotonin regulatory system. One can't just simply
switch from one to the other like candy, without tapering off the first
and then introducing the second at a low dose and then titrating it up slowly.
These are powerful drugs.

The nonstop twitching is obviously tardive dyskinesia, a typical side effect
of psychotropic drugs, usually neuroleptics like the phenothiazines, but can
also happen with antidrepressants.


If you read this study :

" 5-HT may be pivotal to the pathogenesis and therapy of ALS.
Furthermore, cerebrospinal fluid levels of tryptophan, a precursor of 5-HT, are
decreased in patients with ALS and plasma concentrations of tryptophan are also
decreased with the lowest levels found in the most severely affected patients. "

" Furthermore, 5-HT is a precursor of melatonin, which inhibits glutamate release
and glutamate-induced neurotoxicity. "

" Thus, progressive degeneration of 5-HT neurons affecting motoneuron activity
constitutes the prime mover of the disease and its progression and treatment
of ALS needs to be focused primarily on boosting 5-HT functions. "

" .... the 5-HT precursor 5-hydroxytryptophan (5-HTP) improved locomotor function
and survival of transgenic SOD1 G93A mice, an animal model of ALS. "


Serotonergic mechanisms in amyotrophic - PubMed Mobile


I believe he can't swallow, otherwise you could try getting some 5-HTP supplements
from the health food stores and giving it to him.
 

TerryG

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Yes, it is a question that has been asked many times before and I can understand some are tired of it coming up time after time, but still people are contributing their theories/ideas and I for one like to read what you have to say. Maybe this thread title could be added to the sub-forums or am I alone on this one?
 

jpsteeler99

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I don't get why everyone is so rude on this forum. Listen to what your Mom used to tell you, if you don't have anything nice to say then keep your mouth shut. This is a public forum and if someone wants to post a question, let them. If it is a thread that has been brought up in the past, who cares. Let the newbies be newbies, you were a newby at one time.
 

Just A Guy

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I don't get why everyone is so rude on this forum. Listen to what your Mom used to tell you, if you don't have anything nice to say then keep your mouth shut. This is a public forum and if someone wants to post a question, let them. If it is a thread that has been brought up in the past, who cares. Let the newbies be newbies, you were a newby at one time.

They are generally nice people. But you know many people on here are going through a lot. So if they get angry once in a while, I'm alright with it. But in general, thanks so much for helping out so much on this and my other threads.

By the way, in relation to this thread, I read that many ALS patients had positive titers against various viruses. A theory that many gulf war veterans whose chance of als is almost 4 times as likely, got it due to all the vaccinations (more specifically the anthrax vaccine and others that civilians do not receive). Additionally, the theory is that the titers indicate that the virus has passed out of the bloodstream and into the nervous system, where it is somehow damaging the nerves. But of course, this would not prove why only motor nerves are affected.
 

Nighthawk

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"Just a Guy",

PALS generally want to just acknowledge they already have the disease, embrace it, and live "happy" with it.
They could care less about how they got this disease or what caused it. Asking these questions to them just contribute to put more stress in their minds and make them angry and you might end up as a "forum pariah".

May be, I see things a bit differently because I am a chemist, a scientist and, in my years at the academy, and in the private industry laboratories (quality control and R&D alike) I had to ask myself too many questions about why a chemical compound "X" when reacted with compound "Y" produced compound "Z" and not "ABC". I had to write papers and justify to my lead Ph.D. researchers why I came up with such answers. Perhaps that is why I am the way I am today, even when having ALS.

I am sure that the goal of every PALS on the planet is that there could be a cure for this dreadful disease soon.
But, we have left that task in the hands of scientists and just want to continue living our lives the best way we can.

But, here lies the problem.
Scientists and researchers are...right now in the DARK when it comes to knowing what causes ALS.

They know nothing and thus, they should NOT discard an ALS-patient's theory because even when many hypotheses proposed by scientists as well as by non-scientists turn out to be wrong, science is a self-correcting enterprise.
Science is generated by and devoted to free inquiry: the idea that any hypothesis, no matter how strange, deserves to be considered on its merits.
The suppression of uncomfortable ideas may be common in religion and politics, but it is not the path to knowledge; it has no place in the endeavor of science. We do not know in advance who will discover fundamental new insights.

I told my neurologist at JHU what I thought could have triggered my ALS, however, he ditched my idea in less than 5 seconds even when he was claiming he didn't know what caused ALS at that moment.

How are researchers going to come up with a cure for ALS if they do not know and do not want to know what causes it.

How could researchers come up with new drugs to treat AIDS? Because they learnt that this disease was being caused by retrovirus HIV-1.

How can Poison Control administer the RIGHT medicine to a patient who is agonizing with an unknown poison in his blood? Because they found out through relatives what this person took few minutes before getting poisoned.

I respect the attitude of the majority of PALS and CALS in this forum and I try to not contradict them or fight them.
Every person in the world is entitled to his/her opinion, either it's right or wrong and it has to be respected.

But, I still think the less we know about ALS, the less likely we will see a cure in our lifetimes.

Best regards,


NH
 

pearshoot

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take a look at 'the institute of erthnomedicine.com' it offers explanations that you don't see in the mainstream, read some of the articles they list dating back ten years. my take is enviroment, air we breath, water we drink and food we eat. diagnosed feb/2010 constantly here about toxic mutinated proteine but doesn't it take a toxin for something to become toxic. i have never heard medical researchers ever mention that.
 

Just A Guy

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You are right. There are a few identified reasons for ALS, such as excess Glutamate in the brain. But the actual cause for this is unknown. Hope the best for you, thanks for contributing you ideas.
 
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