Re: Paper on PLS

[Guest guest]

Hi Bonnie and Kathy,

As my old neuro (he's not really old, it's just that he moved away and

is no longer my neuro)said, " Patients with PLS occasionally have mild,

nonspecific, and nonprogressive findings of denervation on

electrodiagnostic testing. The severity of the denervation and re-

innervation does not resemble that seen in ALS and does not justify

these patients' being classified as having ALS. These patients may be

concerned that their PLS eventually could evolve into ALS. Although

absolute guarantees cannot be given, deriving some measure of

reassurance from the overall slow progression in these patients is

reasonable. " from eMedicine - Primary Lateral Sclerosis: Article by

Carmel Armon, MD MHS

It doesn't really matter if 20 yrs from now they call us ALS, what

matters is how slow we have progressed. That is the real difference

for us. 20 yrs vs 5 yrs, on average. They are just saying that there

is little difference between ALS and PLS on autopsy. We just take much

longer to get onto to the autopsy table, thank goodness!

The good thing for us would be that we could most likely benefit from

ALS research, saving us from the task of repeating all the trials.

Without this connection, we would never hope to have trial done on us,

just not enough of us and very difficult to see results on slow

progressing disease.

I suspected this would be the conclusion, in fact, hoped it would.