Is there a trigger that causes ALS?

[faithandlove]

Today I went to my first ALS meeting. There were three PALS and four CALS at the meeting. I mentioned that, when I first had pain in my legs (about 6 years ago), I got a massage chair and that helped me. One of the CALS stated that this could have triggered my ALS.

Is that true? Did I do something to trigger this horrible disease? My husband now feels I over did it in working in the yard, and that "triggered" this.

I've read online that they do not know what causes ALS. Has that changed?

I've only cried once since diagnosis, but I'm struggling with my emotions right now.

 

[ShiftKicker]

No. That's absolutely a total crock. People will always search for reasons, blame and meaning in a life altering/shortening diagnosis- but massage chairs and yard work are definitely not triggers.

Oh, please don't feel you did anything to bring ALS upon yourself. It's absolutely not true. It's a terrible and random disease in most cases, genetic in some, but never "caused" by anything you did.

 

[Nikki J]

No one knows what starts ALS or what causes it ( except for those of us who are FALS - we know the cause) that CALS was cruel and ignorant in my opinion. Do NOT beat yourself up. You did nothing wrong. A lot of PALS search for reasons at first. There are none that we know. You were likely born with a genetic susceptibility and some combination of factors ( unknown unless you are ex- military) contributed to onset but unlikely it was a chair or gardening.

 

[faithandlove]

You made me feel better. I had a lump in my throat, and I just wanted to break something. On a bright side, I did have a very nice lady (CALS) come to me after the meeting and she gave me her phone number and told me I could call her anytime just to talk. Her husband could hardly move, and yet she was willing to take time out of her busy schedule for me.

 

[scaredwifetx]

faithandlove, as Shiftkicker said a total crock. Everyone here can testify to the fact that no one has figured out the reason they got this disease. I have used massage chairs and have done a ton of yard work yet it did not trigger in me. You have enough to deal with so guilt like this should not happen. I truly wish someone knew what causes this horrible disease and there is a lot of research but still no cause.

I have been over the past several years in my head time and time again, trying to figure out what could have triggered it for Steve and always come up empty. For several days, I had a thought in my head that it was eating a lot of fish that triggered it. There was a period before his symptoms that we were eating fish several time per week due to a year long diet and healthy eating habit of mine.

Sounds perfectly funny when you read this huh? We will all try to figure out causes so a cure can be found. I believe it can have many causes but a massage chair will not be one of them. You did not cause ALS. My thoughts are with you and if I could give you a big hug I would.

 

[affected]

wow what a thing to say!

There is still no known cause and my husband never had a massage chair in his life, just for the record

Sorry to hear someone could say that to you

 

[Atsugi]

No trigger. I'm convinced of that. All my reading and conversations show that ALS really needs to be divided up into different variants. No trigger, for sure.

(Apologies for interrupting. I normally don't come into the PALS area, but I really wanted to give input on this issue.)

 

[Lkaibel]

I am startled anyone would say such things. If we knew triggers we would be closer to knowing a cause and finding treatments and a cure. Even the actual cause of more vets getting ALS is unknown. FALS has multiple possible genes involved. Heck ALS STILL has a 2-10% misdiagnosis rate depending on what type of clinic and Dr makes the Dx. Know any triggers? We know much more about the majority of other human afflictions than we do ALS.

 

[soonerwife]

Wouldn't it be nice if we could find the cause...

One thing I am curious about is the chances of getting ALS are 2 in 100,000, right? In our small town of 3,200, there have been 5 cases that we know of. Makes me go hmmm???

 

[Nikki J]

The annual incidence of ALS is 2-3 per 100,000. The lifetime risk is considerably higher. I have seen 1 in 350 quoted for men in one place though 1-400 is more common. 1 in 800 for women though one ALS specialist said it was more 1 in a 1000. The annual incidence is about the same as MS. ALS just seems rarer because PALS die faster

There are certainly pockets of ALS reported from time to time. There was one near me commonly believed to be from toxic factory waste. As time has passed the incidence there has dropped after things were addressed

 

[BlueTrain]

A massage chair? And this was brought up at an ALS support group meeting? The last thing you need is to feel guilty about what is happening to you. Even if there was some factual basis for the comment (which there isn’t), I still don’t understand this individual’s thought process. Let’s say you had terminal lung cancer and smoked prior to your diagnosis. Would it be helpful for a member of a cancer support group to remind you that your actions likely contributed to your disease?

With the exception of FALS, I believe that when combined with a certain genetic susceptibility, there is something we’ve done or something to which we’ve been exposed that has caused this garbage. I’ve often wondered if the four summers I worked at a local lumber mill had/has something to do with it. (was I exposed to airborne toxins/irritants?) Or was it the fact that I lifted weights religiously up to the time of symptom onset and did a few cycles of creatine (an innocuous workout supplement) in my early 20s? But then I realize that these are not rational explanations and that it serves no purpose to analyze and obsess over every little thing I’ve ever done. That being said, it sure would be nice to know the answer - if only for my own piece of mind. But a massage chair!?

 

[Jocalyn8]

Has anyone ever been told taking Lipitor may have triggered their Als? My Neurologist did...as did my Chiro

 

[Lkaibel]

Has anyone ever been told taking Lipitor may have triggered their Als? My Neurologist did...as did my Chiro

That seems to be a very controversial idea without a lot of factual basis at this time.

 

[soonerwife]

It was suggested to us that chemicals were the cause of my PALS ALS by an herbalist. My PALS believes that possibly he was exposed to something during his 31 years as a oilfield pump painter. I'm sure we will never know what caused the monster.

 

[gooseberry]

There is a school of thought about lipitor and other statins because a side effect of the statins can be muscle cramping and muscle breakdown.You are to stop them right away if this happens under physician guidance.

I believe als is a metabolic disease. There are many pals with kidney or gall stones, diabetes, high cholesterol, etc Many have had vertigo like symptoms, many were athletes or very physically fit. When your body is out of whack sucky stuff happens. I think the statin idea causing als is due to the metabolic changes that doctors feel they must treat like high cholesterol levels.