Poor Debi; not at all the answers she was expecting! I want to say thanks for asking this in the first place- this is one of those questions I have thought about asking others, but it always feels taboo.

I am not surprised by neuros not telling us our baseline. Really it is just a snapshot of how we are doing at a given point in time; this can vary quite a but throughout the day.

I think the Hahn & Yoehr needs a serious overhaul and maybe it has been updated? The newest UPRS does measure mood or non-motor aspects; there is now even a separate rating scale for cognitive function- all at The Movement Disorder Site.

I won't even begin to comment on using paper and pencil staging or rating scales in research- imagine that going over in cancer research! We are not alone in our frustration- MS patients are fed up too. However, I sense largely because it is not considered primarily a disease for old people, they have more nuanced scales like the one that measures disease impact on socio-economic status. We just have national orgs telling us how much we'll enjoy all our "early retirement" leisure time. They also have a patient-directed scale- overall, it seems like they have too many. See this site for details. Also wondering why we are staged other than for stab at validity in research? I have read that most YOPD won't see Stage VI or V because treatments functionally suspend us at a lower stage. Will they ever get around to sub-typing us at diagnosis? This is in more in line with MS types of remitting-relapsing and a much needed way of sharing prognosis. This info would be much useful than worrying about when everything will spread to my left side.

Laura