Re: Only have PLS

[Guest guest]

I thought PLS was in the brain, not the spinal column. My

understanding is that the spinal column neurons are lower motor

neurons, while we do show some lmn degeneration, the area that is

most affected is the umn, I think I have something that defines it

better, I'll look for it. Anyway, as I understand it, it is the

signals from the brain to the spinal column that are not functioning

properly. I found what I was looking for. Here is a link to it:

http://www.jps.net/neuro/what.html

I really don't want to lump everyone together. I recognize that

everyone is different in their disease and progression. That holds

true for ALS also. It depends on several factors as to how a person

will progress. Area of onset seems to be one of those factors. Most

ALS patients have their first symptoms in their arms/hands. Most PLS

patients have their first symptoms in their legs. But many of both

sides have onset symptoms elsewhere, like their speech. There is a

lot to be learned about PLS from looking at ALs. Yes there are big

differences, but there are a lot of similarities. Do you realize ALS

patients are told ALS is always fatal? If that were true, why is

Hawkings still alive?

I think the real difference between what I was trying to say and what

I actually said is this. If you put a person with PLS on a timeline,

and did not have any other factors such as age or other diseases come

into play, the end result would be pretty close to the same as ALS.

It might take 10 year, 20 years or 30 years. Just like in ALS it

might take 2 years, 5 years or 10 years. Get the picture? PLS is

much, usually much, much slower than ALS. But given enough time for

the disease to take it's course, and it IS a progressive disease, so

it will take it's course, the end result is loss of voluntary motor

function. Thankfully, most people with PLS never have to deal with

that because they get PLS later in life and/or their disease is

rather slow in it's progression.

That is the last I will say on this discussion (although I've enjoyed

it for a discussion topic), you guys are probably sick of hearing

from me. I think everyone probably understands what I was trying to

say. I know I didn't say it well when I first said it. I've got to

think before I type! .... :-)

> I agree with Doug that we really don't know what our condition will

be after 20 or more years. We have such a wide range of PLS in our

group. From Kathy or Bettie Jo to Rita. All have had it a long time.

Joe has said that his condition could possibly be from a fall he had.

We can't lump every one together and say that we will end up as most

ALS people do.

>

> My first Neurologolist that I had told me that the reason we have

such a wide range PLS is that it depends in which part of the spinal

cord the problem occurs. We have no way telling that without an

autopsy. The area that is affected in me might lower or higher than

the next person and that is the difference in our PLS. Does that make

any sense to anyone? If it does then we have no way of telling to

what extent PLS will affect us.

>

> M.

[Guest guest]

:

I was told the same thing. The problem is in the brain, and that the

only way they can determine what is going on is autopsy after death.

This was told to me by the doctor who finally was able to diagnose me.

Also I was told that PLS was " garbage disease " . It mirrors so many

other diseases, that when doctor's don't know what you actually have,

they say PLS. Maybe this explains why we are so different in our

physical conditions. Just a thought! I have previously been diagnosed

with everything from Bursitis to MS.

Rita

[Guest guest]

How true! Maybe we can get it sorted out better with our

research project. My grandfather was diagnosed with MS back in

1954. He died in 1958. His progression followed ALS more closely

than MS, but back in the 50's they didn't have the diagnostic

resources they now have. MS was the garbage disease then. When they

figure the genetics out, maybe we'll have our answers.

By the way,Rita, has your son found out anymore on his

condition? You had mentioned a while back he was having problems.

> :

>

> I was told the same thing. The problem is in the brain, and that

the

> only way they can determine what is going on is autopsy after death.

> This was told to me by the doctor who finally was able to diagnose

me.

>

> Also I was told that PLS was " garbage disease " . It mirrors so many

> other diseases, that when doctor's don't know what you actually

have,

> they say PLS. Maybe this explains why we are so different in our

> physical conditions. Just a thought! I have previously been

diagnosed

> with everything from Bursitis to MS.

>

> Rita