EDSS. ??

[Pfurs]

Does anybody know what EDSS stands for?  

My letter from the ms specialist says that my EDSS is 0 and my ambulation index is 0.   Nobody at my drs visits has ever mentioned this

he also goes onto say that I have underlying ms.  I'm not sure  how I'm supposed to interpret that.

It also states prognosis should be pretty good given age of onset, few lesions and presenting symptom of optic neuritis.   Does anyone know if this is true?   Or heard this before?

I don't remember him telling me any of this when I was there in October but I was pretty upset so maybe I didn't hear what he all said (but then neither does my husband).

Thanks for any answers and clarification you can give me.

Thanks

  

[twopack]

If you join the NARCOMS (North American Research Committee on Multiple Sclerosis) registry at http://www.narcoms.org/
and fill out their periodic surveys, you will notice that the questions evaluate the stability or progression of your MS using questions based on the EDSS.

It's an interesting place to check out even if you don't care to participate in the database.

Mary

[twopack]

EDSS stands for Expanded Disability Status Scale.  It is a 1-10 rating system to evaluate your level of disability from MS.  There are a series of descriptions that progress as disability increases.  I don't remember ever seeing my MSologist give me a score.

The ratings rely heavily on the legs as you progress toward the higher numbers.  It describes how far you can walk, how often you use an aide to walk and how much your physical limitations impede daily activities.  

The lower numbers on the scale indicate people are fully ambulatory (walking at will) and include some other functional factors (like bladder, vision, and sensory problems) and how many of those systems are involved.

A score of 0.0 indicates a normal neuro exam at the time of your visit.

I've never heard the term underlying MS.  It reminds me of a term we have heard too often -- benign.  That generally seems to mean the doctor doesn't think MS is going to interfere much with your life.  In reality, no one can predict what course any of us will be led down by this disease.  We can only look back and see where we have been when we come to the end.

I wish the MS specialist had taken more time to fully explain his findings to you.  It sounds like he thinks you have a good chance against the disability odds but I certainly can't know what he saw or thought.

Are you taking any of the DMDs (disease modifying drugs) or were you given that choice?  Do you have any follow up visits or MRIs scheduled?  If you don't feel confident about how things were explained or have any question about your diagnosis, I would notify that office or seek another opinion.  Sometimes we can't hear everything right at the start.

Hope this helps some.
Mary