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Descending PLS

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I have descending PLS also.

Donna

-- In PLS-FRIENDS , " Ann Hill " <ahill103@n...> wrote:

> I AM ONE OF THE FEW DESCENDINGS WITH YOU

> CAN YOU TELL ME HOW MUCH YOUR SPEECH WAS AFFECTED AND WHAT OTHER

SYMPTOMS

> YOU HAVE

> ANNIE FROM NY

> Re: Descending PLS

>

>

>

> Hi Everyone,

> If we are counting, I also have descending PLS - my speech was

first thing

> affected.

> Janet from Oz

>

>

>

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I have the same descending pattern, Gordon. But Dr. Pioro (Clev

Clinic) still calls it " probable ALS " I've heard he has a hard time

giving the PLS Dx. I will have had symptoms 5 years this June. My

speech, swallowing and chewing all GREATLY improved in the past 18

months. However my hopes were squashed as my left leg stiffened,

foot spasms in and under intermittently, and toes curl under. Most

of the time I walk very slowly and with a slight limb...no assistance.

Thank the Lord my CPK is normal so NO muscle degeneration to this

point.

I'm planning a vacation south and am packing my last clinic notes in

the glove compartment. With my slur and lack of balance even though

slight, I don't want a speeding ticket to turn into jail time. lol

Eva

> Ann,

> I have descending PLS. Mine started with what I described to my

doctor as a surplus of saliva. After many trips to ENT's, which

produced nothing, I started having a speech problem and started

seeing neuros,.who would say " somethings wrong but I don't know

what " . All this took about 4 years and finally a neuro at the

Cleveland clinic diagnosed it as PLS in November 2001, I was 71 at

the time.

> Gordon

>

>

>

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