What causes ALS?

[supergirl]

Seriously, there must be something that causes ALS. Do they just not know exactly what it is yet? My mum first started experiencing her muscle weakness after she was put on Lipitor for her high cholesterol. She swears it is because of the Lipitor that she has ALS now, since once of the side effects was muscle weakness. What do you think? Also, I read another post of a woman who lost her mum when she was 18 and now her aunt is going through the same thing....I don't know if these 2 women were related, but possibly could they have been exposed to something similar (toxins, etc) that would have coused this disease on them both?
I just cannot accept that ALS is a random disease...something must cause it.

[gilly]

sure, something must cause it but they haven't figured it out yet. my aunt did the same thing as your mom and the lipitor... but she was on an antidepressant. she swears that caused her als to start up. i highly doubt it. some people get it through genetics. but it's VERY rare. mostly, it's random. i know what you mean about not wanting to accept that explanation. try to join some events that raise money for als research... hopefully they'll get to the bottom of it with our help! i am doing a walk on long island in september. it's the most we can do right now.

take care.
nicole

[emjoi]

I just reckon my dad walked under a ladder or broke a mirror a few years back.
All in the course of a year, he got hit by a car, had a heart attack, developed Diabetes, and then got ALS. As if the gods decided it was time to pick on him.

So who knows? Was it the shocks to his system from the other stuff?

[BWk]

Supergirl,
Latest research, March 06, all pathologies that were done on ALS persons [ dead als patients]showed excessive protein in motor neurons, what causes the excess they don't know , but a leading U.S.researcher says she thinks it's something going haywire in the genes.Haywire wasn't the tech. term,but close enough. If two sisters both got it[als] then it was genetic definitely!BWK of N.M.

[supergirl]

so it can be hereditary? every doctor I talk to says it is not passed down, it is just random.

[momina]

Hi supergirl, It is really frustrating when you start thinking about what causes this disease, there are so many factors, our world is full of things that we did not have before, drugs, such as lipitor for instance, My mother aunt and uncle all had it , 3 siblings, Hard to explain, they were all very different people, I am involved in alot of fundraising, it is a great thing to do to help the research. I don't know when the cause may be discovered but eventually it will, as for it being hereditary ,I beleive it is random as I beleive it is caused by something that is different for every person, and that is a mystery, I drove myself crazy looking into causes and what people thought were the causes but there was no concrete answer and all it really did was take precious time away from me and my mom, I hope all is going okay and keep asking questions, some will not have answers unfortunately, take good care

Sincerely

Maureen

[paula B]

Sorry to sound so doubtful but i wonder if they will ever find a cure for any of these money making illnesses.:oops:

[joelc]

Hi Paula,

I too am cynical on whether the powers to be really want to find a cure.

I have been very sceptical for many years (way before ALS) about the establishments desire to find a cure for any disease.....look how many high paying jobs would be lost once the research stops. Many years ago I had a conversation with the wife of a prominent cancer researcher. When I mentioned finding a cure and whether she thought they were close, she said I hope not - my husband would loose his job?!?!?!?!? Can you imagine.....I often wonder if researchers are really looking for cures....their gravey train would be over if they found one.

Sorry if I stepped on someones toes. I would love someone to prove me wrong!

Joel

[Jane]

Hello Supergirl, a small number of ALS cases are called familial, ( they have come down thru several generations of one family). I think it is about 10% of cases. Other cases are called sporadic.
Either way it is a devastating disease.

Take care
Jane

[caregiver0204]

If you worry about spending money on research for a cure or finding the true cause, Use you resources to support patient care and family support a very worthy cause.:-D

[LittleHeart]

What causes ALS is a question i often ponder.My husband firmly beleives that his was caused from years of exposure to chemicals at paper mill where he worked.
Reason he belives this is because 3 of his coworkers was diagnosed at same time.
Seems like a strange coincidence doesnt it?

[paula B]

If you worry about spending money on research for a cure or finding the true cause, Use you resources to support patient care and family support a very worthy cause.:-D
I too have als,,thats why i am doubtful of a cure. I go to the als clinic for a 5hr appointment and leave there not any more informed thn when i got there. Then i get a bill for $$$ and i think for what? So i have cancelled my next appointment.

[paula B]

Hi Paula,

I too am cynical on whether the powers to be really want to find a cure.

I have been very sceptical for many years (way before ALS) about the establishments desire to find a cure for any disease.....look how many high paying jobs would be lost once the research stops. Many years ago I had a conversation with the wife of a prominent cancer researcher. When I mentioned finding a cure and whether she thought they were close, she said I hope not - my husband would loose his job?!?!?!?!? Can you imagine.....I often wonder if researchers are really looking for cures....their gravey train would be over if they found one.

Sorry if I stepped on someones toes. I would love someone to prove me wrong!

Joel
Hi Joel,
Yep i think were on the right track here.
I just know that up until april 1st of 2006 i was driving a semi,,now i can barely walk.
This whole thing is frustrating me to on belief. There is a support group close to where i live but its closed in the summer,,how crazy is that?

Paula

[marlo]

Supergirl,
Latest research, March 06, all pathologies that were done on ALS persons [ dead als patients]showed excessive protein in motor neurons, what causes the excess they don't know , but a leading U.S.researcher says she thinks it's something going haywire in the genes.Haywire wasn't the tech. term,but close enough. If two sisters both got it[als] then it was genetic definitely!BWK of N.M.

Hello To All,

I know research shows that there is too much protein in the motor neurons. The question is how did it get there? Is it possible that certain diets,, such as the Atkins Diet,, heavy in protein could play a role in this? If anyone out there with knowledge in this area has an answer,, i'd be interested in hearing from you.


Love and Prayers
Marlo

[Al]

I've wondered why they can send a man to the moon land him get him back into space to meet the other ship and land back on earth and yet they can't find a cure even for the common cold. It's just gotta be about the money. Hate to be a conspiracy theorist but the big drug companies have to be sticking it to us just like oil companies and most big businesses.
What I do know about ALS is that in 5 to 10 percent of the cases it is familial meaning a SOD1 gene is passed on. The rest are sporadic meaning no known relation has it.
Toxic exposure setting off an already susceptible gene is believed by some researchers to be the cause of sporadic ALS. Not all of them believe this but some do.
Lipitor has been bounced around here before as a cause but not all of us have been on it. I had my Cardiologist switch me from it 2 months ago and a week later read a report that some researchers in the states think bigger doses may help control ALS and are setting up mouse trials. So who do you believe? Anyway the new drug made me feel crappier so I'm back on the Lipitor.
A lot of people on here have suffered severe head trauma. Some researchers are looking at that as well as stress. A lot of research is being done but seeing as we seem to die off quickly there isn't much to work with. My Neuro is asking all his patients for a piece of brain material and spinal cord material after death for research. Some may find that offensive but I hope it'll help others and maybe be a part of a cure or at least find out what's causing it.
Just as an aside the money raised from the Walk for ALS is split 60/40 for client services and research.

[anne]

Hi Al: My mom was asked for her sinal cord and brain as well. It is all a personal choice. We attend Sunnybrook's ALS clinic. We were also asked to participate in giving fluid from the spinal (Like a spinal Tap). However, I work in a medical office and do know that there could be potential complications from that.

I Know they all mean so well at the clinic but Myrna mentioned repeatedly about the feeding tube which has set my mom back emotionally. My mom has not lost any weight and is still eating with little difficult and the occasional choking. I think once there is great weight loss then maybe there will be more of a need.

From what I understand you must too go to the Sunnybrook Clinic. In one of my previous posting you mentioned for me to ask about a talking device. We did and were somewhat disappointed. They made every effort to have it for us the next day. We were first told it would be $400 per year but once we picked it up we were told that it would be $800.00 per year because it is in Italian. The voice is totally unacceptable. It talks extremly fast, we have put it on the slowest mode and it is still not acceptable. It is very difficult for me to understand it in person and over the phone. Perhaps I will have to try the dynavox which we prerecord into the machine.

Anyhow. thanks for all of your interesting postings. God Bless, Anne

[supergirl]

Al mentioned Lipitor has been discussed on this forum a bit....now I am wondering, since Al is also on Lipitor, is there a relation between high cholesterol and ALS? Mom was diagnosed with high cholesterol just a little while before being diagnosed with ALS.

???

[Al]

Yes anne I do go to Sunnybrook. I know Myrna means well about the feeding tube. Everyone I have seen or heard from all agree it is better to get it before you really need it. Once you start to lose the weight it goes quickly and it is hard to gain it back.
I'm not really up on all the communication devices because I haven't needed one yet and only know about what I read here or on other forums. Sorry it didn't work out for you but if you persist they should be able to work out something your mom can use.
The Lipitor issue is an interesting one. One theory thinks that it is a contributing factor to ALS. I read recently that a researcher in the US is doing a study thinking higher doses of it may help ALS patients. So who do you believe? Time will tell I guess. Hopefully we'll all have enough time for them to figure this all out. Take care. AL.

[crytl27]

My dad was recently diagnosed with ALS a few mos ago. He began having CHRONIC HIVES in 2002 (& has had them everday ever since) - he was exposed to DIESEL FUMES the day he broke out. The muscle cramps started throughout his body about the same time.

He had a HEAT STROKE in 2001 in which he passed out & had to go to the ER. I have noticed that a lot of people w/ALS seem to be very ATHLETIC or have undergone an extreme physical regime. My dad was a "WORKAHOLIC" and he worked lots of overtime and then would come home and do additonal physical work on his farm. He also worked outside in the heat (no a/c in his work truck).

Recently my parents have been researching a theory regarding MERCURY FILLINGS possibly causing ALS. There are a few different websites that describe this theory, the Dr.s and Dentists that support it & their research.

My dad has 9 silver mercury fillings in his mouth & has an appointment to get all of them pulled out in a week.
Has anyone out there with ALS experienced any of these things leading up to their diagnosis?

[xsparklingwinex]

Hi Crytl27,

I'm sorry to hear about your Dad. I have ALS. I had all of my mercury fillings removed and replaced with white ones. I can't say if it made a difference or not. I was put on a few detox meds by my dentist. He took videos of me hoping for a drastic change. My progression is somewhat slow compared to some people so I don't know if it was the fillings, pills im taking, the detox or a combination. I didn't get any better since but I didn't get much worse either. It seemed worth the shot. Good luck w/ Dad. Love, *Holl*