ALS - Rare Disease?

[kylisa]

I also wonder if flu shots can trigger virus attacks that lead to ALS. Looking back, my mother's last flu shot (in 2005) put her down for 2 weeks. She literally was down within 24 hours. It wasn't like a normal cold or flu. She was totally washed out. Could barely hold her head up. She finally "recovered" enough to go about her daily activities after a couple of weeks but, she never got back 100%.

I wondered at the time if it triggered Epstein-Barr, now, I really wonder what happened!

 

[John1]

It's approx 1 to 2 cases in 100,000 per year.
It's approx 1 in 2000 people will get it in their lifetime.

-Tom

Tom, I think the figure is actually quite a bit higher than that. One of the problems is that people are often not reported as dying of ALS. Instead, death is put down to pneumonia or similar ailments. Using a simple back of the envelope calculation and using 2005 US census data we know that 2,448,017 people died of all causes and can assume that about 6500 people died from complications of ALS. I use this figure since it it widely reported as being the approximate number of people who contract ALS each year and therefore equals about the number who die from ALS. Dividing the number of deaths from ALS by total deaths we get 6500/2,448,017=0.00265. Stated differently approximately 2.6 people per thousand die from ALS. i.e., your chances of dying from ALS are about one in 377. Pretty fearsome odds. No wonder we all know people who have ALS.

 

[tmasters]

John,

I'm quoting the Washington University figures from their website. But you make a good point. It's true that tracking data are lacking, hopefully these data will be improved with the ALS registry in the coming years.

Beth,

Yes it's exciting. I didn't want to respond in the other thread since that one is supposed to be for Christmas stories. The young man who's going to be proposing to my daughter on Christmas morning (Shhhh) is the same one who knocked her up! So while he's a really great guy (considering she's my daughter and NOBODY is good enough by definition) I wish they had done things in the reverse order. But my granddaughter is such a blessing and she's 4 months old now and I really wouldn't change anything now if I could.

I need to upload pictures to my profile I think.

-Tom

 

[BethU]

Tom, yes, we need photos ... lots of photos ... to prove your version of events.

The saying in my family was, "The first baby can come at any time. After that, it takes nine months."

Congrats again !

 

[4rhl1981]

I bet if they looked at environmental factors (like pesticides and other neurotoxins) they would find that exposure is the cause. I highly doubt its a virus or inhertited disease. As far as an SOD2 gene, I would place my bet that its a mutation caused by environmental factor.

 

[ptich]

John1, it is probbaly simpler than that. 6500 new cases in US per year, US population is 300 millions, that gives you a bit more than 2 per 100,000 per year.

Lifetime chances are a bit foggier because of chainging expectations of the life duration, etc.

The fact that I got to know 3 folks with ALS (2 certain, 1 undiagnosed on BiPap, not even counting myself) within 15 years seems to imply that my circle of friends, coworkers, and relatives is 3 / 2 * 100,000 / 15 = 10,000 folks. That is a clear exageration. So my set is probably biased in some way. May be because all of them were immigrants from the former Soviet Union (fillings with mercury were popular there, sometimes with low quality material... Cannot think of anything else that could make this set biased towards higher ALS - life there was less stressful overall...)

 

[ktmj]

I don't know of everyone in my county of 125,000 that has ALS. One was diagnosed almost 6 years ago and they said it was aggressive (bulbar) and he still drives occasionally.

The other was diagnosed a little over a year ago and now cannot speak, nutrition through a PEG, still golfs occasionally with a strap to hold the club to his hands, and must walk on mainly flat ground (limb onset).

Both of those guys were construction workers (built houses for a living). Go figure - I have always been very active too and now have neuromuscular issues ?

I don't think any one thing causes it - or we would have a Surgeon General warning and a cure.

 

[Emel]

I agree with you. But I don't know if the food we eat has an influence on ALS or MS, but never heard that food causes ALS.

 

[Momma]

Tom, I had leg onset in late February and my diagnosed was May 20.
Just curious on how you are doing and if you are doing anything that seems to benefit you.
How is your progression.
By the way, I grew up in Costa Mesa, pretty close to Anaheim.

Thanks,
Nancy

 

[tmasters]

Hi Nancy,

Sorry to hear about your diagnosed. My progression is very slow. I started using the cane full time a couple months ago. I just started noticing some weakness in my thumbs makes it hard to grip things tight. But overall I can't complain.

I take lots of supplements and vitamins, as well as Rilutek and I'm still on Lithium. Does it help? Who knows, but I don't think it's hurting. Nothing is really expected to make things "better" only help slow the progression.

My daughter will be moving to Costa Mesa after she gets married later this month. Small world.

Take care,
-Tom

 

[Big Mike]

Over at ALS TDI, they indicate the odds of obtaining ALS in your lifetime as 1:400-1:600.
Not nearly as common as cancer but certainly not that rare either.

 

[Big Mike]

Hi Nancy,

Sorry to hear about your diagnosed. My progression is very slow. I started using the cane full time a couple months ago. I just started noticing some weakness in my thumbs makes it hard to grip things tight. But overall I can't complain.

I take lots of supplements and vitamins, as well as Rilutek and I'm still on Lithium. Does it help? Who knows, but I don't think it's hurting. Nothing is really expected to make things "better" only help slow the progression.

My daughter will be moving to Costa Mesa after she gets married later this month. Small world.

Take care,
-Tom

Hi Tom,

Just curious--what part of the body did the disease first start affecting you? Also, were you diagnosed with the upper motor neuron variant?

THanks,
Mike

 

[tmasters]

Hi Mike,

My first symptoms were in my legs. First muscle weakness was in my right calf muscle, and gave me a painless limp.

I have both UMN and LMN symptoms, though the LMN are more prevalent.

Wow! 400:1 and 600:1 seem much more frequent than I was led to believe. Do you have a link to the ALSTDI claim? I guess if people aren't dying of cancer or car crashes (airbags) anymore they gotta die of something, that pushes up the ALS numbers?

Take care,
Tom

 

[Zaphoon]

I was offered a flu shot today at the VA but I declined. This little voice in my head was saying, "Huh-uh - you might get an MND from it!" I thought, "Shucks! Sure don't want any part of that! Do I?"

Zaphoon

 

[peter57]

Are you sure it wasnt because they use such big needles:lol::lol:

I had mine a while ago and was fine when i got up off the floor :wink:
cheers
Peter