ALS - Rare Disease?

[strikeout]

I'm beginning to think ALS is really not all that rare and would like to know what is causing the numbers to climb. My husband has been given a diagnosis of progressive muscular atrophy by one doctor at a university hospital, but his own doctor has not yet given a firm diagnosis (both ALS specialists). My sister's husband is in his fifth year with ALS. Now we have heard from my cousin that his 37 year old son has a possible ALS diagnosis and has been sent to an ALS clinic by his neuro. That is 3 people in one family, all NOT related by blood. On this forum alone, there are 3 people living in a 15 mile proximity. Does anyone agree with me about a higher incidence than reported?

[crystalkk]

Yes, I do agree. I have been saying it myself for a while now.

[BethU]

Hi, strikeout & Crystal ... I'm sure we will see an ENORMOUS increase in the next decade, as the Boomers pass ages 50 and 60, which is when ALS usually starts appearing. In fact, the numbers of ALS patients may have been artificially low for the last 10 or 15 years, because of the very low birth rate in the Great Depression (my generation).

In addition, our environment and food supply are permeated with chemicals/toxins. I'm not one of the "de-tox at all costs" types, but obviously, these contaminants are not good for us.

I don't know if there is a higher incidence than reported, because record-keeping has apparently been lousy. But hopefully, with the bill passed by Congress AT LAST to do a nationwide survey of ALS patients, we may find some very startling numbers.

[quiksilver]

I feel that ALS is simply a disease name that encompasses (sp) all the neuro diseases that we can't identify or name at this point in time. The only way to diagnose the disease is to rule out all the diseases that are known. I think that there may be tens of diseases that all causes ALS breakdown in their own unique way.

For all we know each one of us could be battling a different disease that is just labeled ALS for the moment. My guess is that years down the road peoples ALS dx will be called different names as we understand the disease(s) further and have tests/techniques to differentiate between them.

Kinda makes me scared about finding a cure...hard to hit a target that is jumping around. Dont mean to be a downer, but wondered if anyone else felt this way about ALS.

[BethU]

I absolutely agree with you.

[quiksilver]

MG causes lots of neuro problems, but the have a test for it and can typically nail down the diagnosis. This means that they could accurately put together a group of patients to try the various drug trials. Who knows what diseases actually are comprised in "ALS" control groups!

It scares me that they may find a "cure" that works 80-90 percent on the time on the "ALS mice" one day. However I think they will then go into clinical trials on people and realize it only works on on 3-5 percent of participants...Also scary that they might be doing trials on mice that seem to fail, but actually might work on some ALS patients who have a different "strain" of ALS. However we will never know because the mice doesn't have "ALS" but instead has a disease that will have a new name one day!

Darn mice may only represent 3 percent of people who are "ALS patients"! Guess it is just the process of finding cures...just sucks that it could take so long!

[Jennifer51]

Quicksilver...I agree with you, I am beginning to think that neurology is one science that most doctors only have an incling about....I am sure there are more different things going on than they know about..or can even dream about.
Strikout....I would agree...als/mnd is rare?????
so the statistics MIGHT say...but in my VERY local area, within a couple of miles...we have a friend whose brother died with it, another friend whose husband of 36 got it, and is still battling on...then when I was diagnosed and went to my GP..he said ..oh you only see this thing once in a lifetime in any practice, and you are the second one...(and she is not one of the ones we know of)...Then the lady from the mnd association went on holiday for 2 weeks, when I rang to say I had been diagnosed, could she come visit...she got back to me and said that whilst she was on holiday, she had had 30 calls from newly diagnosed people....but that is in an area of about 10 miles square...but I mean, I dont call this rare now...it does seem to be growing in number.

[brendapals]

I have to think that because of awareness, we are hearing more about ALS? maybe, maybe not...


When I was 17, my mother was dx with MS at age 52, died at age 77; a lady about 6 blocks north of where we lived was dx with MS at age 36, died at age 39; then a lady I graduated from high school with, who lived 6 HOUSES from the 36 y/o was dx when she was 42, and is still doing fine as far as I know.

So then in 2003, my oldest brother dx with ALX at age 53, died 14 months later at age 54. He had not lived in the neighborhood, or even the same state for 31 yrs. I was dx in June 08, 47 yrs old, still working as a nurse-but only 3 days a week, just finished my bachelor's degree in nursing and graduated over the weekend, have 3 boys, one husband, 250 acres of farmland to oversee, and life is better than ever!

In the back of my mind, I must try to remember that old saying I used to hear from my ER days:
"why do you think they call it practicing medicine?"

Just my input,
take care all,
brenda

[Danijela]

Hi everyone. My partner's neurologist suggested that there appear to be more people with MND (and his clinic is bursting at seams) because they are now better at diagnosing it.
I have been reading with interest the posts about multiplicity of diseases that come under the umbrella of ALS or MND. If I am not mistaken MNN has only been described, with a criteria for diagnosis established, in the last two decades, so who knows what else lurks beneath the surface. Medical profession keep reminding us of notions of 'spectrum' and 'overlap' where MND is concerned.

[ptich]

Danijela, there several deseases under MND (Motor Neuron Diseases), but ALS is the most frequent one, Prograssive Bulbar Palsy is basically ALS with bulbar onset, PLS is hard to distinguish from slow UMN onset ALS, etc. So, unless they find new MNDs, increase in MNDs would mean mostly increase in ALS cases.

For myself, I find it very hard to believe that ALS/MND is a rare disease. I personally knew 2 people who died from it, one is his 50s and the other in her late 70s. And just a few days ago I ran accross my former coworker who has symptoms very similar to mine (mostly UMN) since 1999, had to go on nightly BiPAP last year, but still officially undiagnosed because his EMG is normal. This certainly does not sound like "1 or 2 cases per 100,000".

On the other hand, EMG/NCV technician of my local neuro told me in December 2007 that they diagnosed 3 cases of ALS in 2007, same as average in the previous years. Go figure.

[dsiple]

I have often wondered about the environmental factors involved with this disease. I come from a small town of maybe 6500 people. I know of 3 people that have died of this horrible disease and 6 other people that have ALS, including myself, along with about 20 25 cases of MS. That seems awful high for a small town, those numbers don't include any other towns, just Punxsutawney.

[tmasters]

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

[CB1977]

I certainly agree that it seems that more people are coming up with ALS and MS these days. I have to believe that ALS and MS, at least some types are triggered or caused by toxins we eat, breath, and come into contact with more often these days.

[BethU]

Shhhh. (Hi, Tom. Congrats on your daughter's big surprise! This will be a Christmas to remember. And didn't you say recently that your first grandchild has arrived? Isn't this a wonderful time of life?) Shhhhh.

[Jennifer51]

I agree that I think it may be something we eat...
the other thing I find interesting, is that they say men are more prone to it than women, but I have heard of lots of women getting it, and lots of bulbar onset....just what is going on...