Re: RESEARCH: Types of PLS diagnoses

[Guest guest]

Thanks Mark! I just KNEW there had to be different types of PLS.

Different people seem to follow different courses and symptom

progression. I have especially noticed that...not all...but many of

us that started symtoms in our 30s or younger seem to follow a

somewhat more aggressive course. Very interesting.

Di.....PLS....Canada

In PLS-FRIENDS , Mark Weber wrote:

>

> The just read a copy of the full text of " The natural

> history of PLS " by Gordon, MD et al. (When I

> post research articles, they are merely copies of

> abstracts of the articles, from PubMed.gov. ) The

> article makes several points that PLSers will find

> most interesting.

>

> Dr. Gordon (who, incidentally, is currently my

> neurologist) divides what we all call PLS into 4

> diagnostic categories:

>

> 1. Autopsy proven PLS – clinically diagnosed PLS with

> no loss of lower motor neurons shown at autopsy

> 2. Clinically pure PLS – evident upper motor neuron

> signs, no focal muscle atrophy and no denervation in

> EMG 4 years from symptom onset. Age at onset after

> 40.

> 3. Upper motor neuron (UMN) dominant ALS – symptoms

> less than 4 years, or disability due predominantly to

> UMN signs but with minor EMG denervation or lower

> motor neuron signs on examination, not sufficient to

> meet diagnostic criteria for ALS.

> 4. PLS Plus – Predominantly UMN signs but also

> clinical, laboratory, or pathological evidence of

> dementia, parkinsonism, or sensory tract

> abnormalities.

>

> Obviously, no one reading this is in category 1.

>

> A diagnosis of " clinically pure PLS " takes 4 years to

> obtain, since symptoms could change to either HSP or

> ALS.

>

> During the 4 years before a " clinically pure PLS "

> diagnosis can be made, the diagnosis is " upper motor

> neuron dominant ALS " . If there is no clinical or

> laboratory evidence of lower motor neuron damage after

> 4 years, then the diagnosis changes to " clinically

> pure PLS " .

>

> If there is clinical or laboratory evidence of lower

> motor neuron damage after 4 years, then the diagnosis

> remains " upper motor neuron dominant ALS " . Obviously,

> we prognosis for " upper motor neuron dominant ALS " is

> better than for ALS.

>

> This article is one of several that resulted from the

> PLS Symposium that was held last year in San Diego.

>

> Mark

>

[Guest guest]

Thank you for posting this. I printed it so to take to

my 1st visit in 4 years at UCSD.

I would catorgorize me as a 3 back then. I think I

have moved up to the 4. Since I went on strike in

2004, I haven't had any more testing done. Just got

tired of the Merry-Go-Round.

Seems I just can't stand up from a chair anymore,

without my arms helping me up. Don't even get on the

floor or it takes a lot to get back up. My calf and

thigh muscles are so tight and hard all the time now.

The won't give an inch, it seems.

I am so looking forward to seeing this Dr. Sheean. He

was the only one that helped me when all this began in

2002. Hopefully my progression will now get a DX.

Back then, he wanted to see how I progressed. Thought

it would be better if we tried a local guy to monitor

but he was useless, just cost me too much money. The

Dr. in Phoenix, was looking for certain criteria for

his own research, and I didn't meet it and was

basically brushed off. Since my experience back then

with UCSD was so positive, I am willing to give it

another shot. Hopefully, we'll come away more educated

then stressed.

Thanks again Mark for posting this.

[Guest guest]

I think many of us will take this to our doctors---i am hoping mine has already

seen the research as he tries to stay current. i know what you mean about the

merry go round, but i was getting worse and worse so fast, i had to insist and

survive the trip! Good luck at your doc!

Tawny

Yarlott h2oyarlott@...> wrote:

Thank you for posting this. I printed it so to take to

my 1st visit in 4 years at UCSD.

I would catorgorize me as a 3 back then. I think I

have moved up to the 4. Since I went on strike in

2004, I haven't had any more testing done. Just got

tired of the Merry-Go-Round.

Seems I just can't stand up from a chair anymore,

without my arms helping me up. Don't even get on the

floor or it takes a lot to get back up. My calf and

thigh muscles are so tight and hard all the time now.

The won't give an inch, it seems.

I am so looking forward to seeing this Dr. Sheean. He

was the only one that helped me when all this began in

2002. Hopefully my progression will now get a DX.

Back then, he wanted to see how I progressed. Thought

it would be better if we tried a local guy to monitor

but he was useless, just cost me too much money. The

Dr. in Phoenix, was looking for certain criteria for

his own research, and I didn't meet it and was

basically brushed off. Since my experience back then

with UCSD was so positive, I am willing to give it

another shot. Hopefully, we'll come away more educated

then stressed.

Thanks again Mark for posting this.