Does environment cause/trigger ALS?

[TFB]

I feel like there's not enough studies on the common factors among people who get diagnosed with ALS. I feel like if scientists can figure out a common link for sporadic cases, then it might help find a cure. I've completed a few ALS surveys regarding my background, but I don't believe they go deep enough. I've heard that military veterans are diagnosed at a higher rate than others. The surveys always ask: did you serve in the military? I answer no because I did not, but I worked on an Air Force base for 40 years as a civilian engineer and performed years of active testing of receivers and jammers in labs and on fighter aircraft in hangars and on the tarmac. Of course, we took safety precautions and routine bioenvironmental testing.

In my youth, I worked in the construction industry as a laborer/carpenter. This was in the late 70s and early 80s. Back then, we didn't wear personal protective equipment like we should have. I was diagnosed with cancer ten years ago. I had surgery to remove a neuroendocrine tumor from my small bowel and again a year later from my liver. Then, I started having CTs and MRIs with contrast every six months and then annually for surveillance for recurrence. I had a few PET Dotatate scans in place of MRI. For those, I received Gallium-68 injections prior to the scan. None of my physicians have suggested a link between the type of cancer I had and ALS.

Then, I had three Moderna COVID jabs. Makes me wonder if any of these things or some combination of contributed to my diagnosis as I have no family history and my DNA testing and was negative.

 

[Nikki J]

The prevailing theory is that there are 6 steps or triggers that need to happen for someone to get so called sporadic ALS. People with FALS need fewer the exact number depends on which mutation you have. No one has figured out what those triggers are and almost certainly they are not the same for everyone. You might have abcdef someone else ghijkl someone else agmqtz

The general belief is some of them are unavoidable like natural aging. It is also believed that even though people like you have no identified single genetic mutation you probably have a mild genetic susceptibility caused by several little glitches.

Probably the best study of possible triggers is the prefals study by Dr Benatar in Miami. He has been studying carriers for almost 20 years and part of that is looking at residences, occupations, medications, diet, exercise, medical history and hobbies. A history is taken at the first visit and updated each time. Real time recording is probably more accurate than recall and there is no reason to think fals triggers other than the mutation are different.

DOD has actually funded a lot of ALS research historically Some theories include the large number of vaccines and the physical exercise required but environmental exposures especially in the Gulf seem likely Other professions have higher rates too especially morticians which I think they attributes to embalming chemicals and professional athletes in contact sports like football due to repetitive head trauma

 

[lgelb]

The military link is why ALS is treated as a service-related disability, with attendant benefits.

My husband participated in the Stanford/CDC epi pilots. He ticked every toxic exposure question there was. These are similar to those associated with many cancer subtypes, and non-ALS neurodegenerative disorders, to varying extents.

Your body is a biome. When you stress it out, it often responds.

 

[Denise E]

TFB,
I agree with you. I’ve answered many surveys and have found them to be quite vague. I always think there could be many additional questions asked that could potentially uncover more precise information that generates more leads as to what causes ALS/or to turn on ALS. There are many variables, in some cases, to one question asked in the surveys.
I was exposed to many chemicals as a young girl. My father had a warehouse full of large drums of chemicals for lawn care. I used to run around the warehouse touching everything. I am also an artist/painter and have exposed myself to many various paint products as well as painted interiors of many homes when I was a decorator.
I’ve always suffered from gut issues too.
On the flip side, I have spoken to PALS who have had ALS for 10, 20+ years that have never been followed to try and understand why they’ve been able to out live the usual 2-5 years. Some have one or a few symptoms and others have been in a wheelchair for 10+ years.
Why a slow progression? Or why have they stopped progressing. I think anyone living beyond the 5 years should be in a study that concentrates on their longevity.
Thank you everyone for your input.
I’m closing in on 2 years since my bulbar onset ALS diagnosis.
Denise

 

[Debk]

Denise. How long did you have Bulbar symptoms before your diagnosis? I experienced slurred speech about 9 months before my Diagnosis of April 4, 2025. Part of the stress related to this horrible disease, is the wide variation in life expectancy. There is really no way to make long term plans. How do you plan your future?

 

[Clearwater AL]

I’ve often wondered. I was out in the boonies on fire bases with 8” self propelled
howitzers. We went back to base camp which had a bar, 5 of us had way too
much to drink, we took a truck and went into town, Pleiku, when we came back
the MPs were waiting.

Getting to the point, we were Article 15’d, no loss of rank but punitive duty.
We had to spray weeds around the base camp barbed wire perimeter. We
were given a jeep with a trailer with two 55 gallon drums, generator and spray hoses.
There were possibly Orange Bands around the barrels best to our memories.

It was in my records and the Company records. I was awarded a disability
rating for Agent Orange exposure. The other 4 have all past away but not
of ALS… Cancers, Heart problems the VA has also linked to Agent Orange.
I had by-pass heart surgery at the age of 47 and a stent at age 56.

My progression was slow up until 6 months ago… two hospital stays, one
in the Neurological unit in a bed that wouldn't let me out for 5 days and one
for the Flu. There is very little I can do anymore.

But… was Agent Orange my link to ALS ? I’m pretty much a believer
that different chemical exposure is a link to ALS from the many different
jobs people may have had... even many years ago.

Didn’t mean to ramble again… something I still can do. Put it on Word
first one handed, copy then post.

 

[Loulou22]

I Was diagnosed relatively young, only 41 …
I often reflect on my years prior to MND to try and figure out what happened to trigger it. A naturopath once told me, without evidence mind you, that growing up in an area that used to be agricultural had led to pathogens in my body.
I wonder if I hadn’t been vegetarian since the age of 15 and my body had adequate iron (it’s regularly very low) could it have been avoided?
I’ve suffered from postnatal anxiety, generalised anxiety disorder and stressful life events and wonder if these could have impacted me.
Heck, I’ve even wondered if that one time I went bungeejumping could have had a stressful impact on my neurological system!
People with no idea of my history have even tried to tell me it was from the Covid vaccine, even when I tell them my early symptoms predated that.
I briefly took up restoring old furniture as a hobby during Covid lockdown, could the fumes or chemicals have contributed?
These wonderings are just the beginning. I think I could drive myself crazy trying to think of all the possibilities.

 

[lgelb]

Don't drive yourself crazy, Loulou. Many, many people have different kinds of stress and trauma throughout their lives. There has been no suggestion that low iron, short-term moderate chemical exposures, or one-time athletics play a role. And, there are more people who have done or had each of the experiences you list that do not have ALS, than who have it, many times over.

 

[Electric Ranger]

Denise, I agree with your comment on Slow Progressors. Partly because I am one, 5 years on August 28. I've been wondering the same thing for my own reasons and it makes sense. It begs the question, why am I still alive? Dr. Bedlack studies PALS that have reversed ALS and so far has found out of 60+verified survivors only a few have some common item. Like 4 or 5 took Curcumin. I don't recall how far he has drilled into each person's biological and chemical profile. Nothing like a silver bullet has surfaced so far. There seems to be thinking that there are different kinds of ALS and "Slow" may just be one of them.

 

[Nikki J]

It may be a genetic variant that drives the reversal Mutation in IGFBP7 gene tied to rare phenomenon of ALS reversal

 

[Denise E]

My bulbar symptoms began 7 months before I was diagnosed. My first symptom was a change in my breathing which was 9 months before I was diagnosed with bulbar onset ALS.