I have SPMS; I asked my neurologist what was my EDSS score and he responded by saying it would take a lot of time to determine it and that it wouldn't make any difference. He said that I was probably 2.5. Well, he only sees me sitting when he comes into the exam room. I assume he knows that I use a rollator simply because it's right beside me when he comes into the exam room. He never taps a knee or watches me stand, much less walk (or attempt to walk). So I looked up EDSS scoring on the internet to determine what I thought was my score and it's reflected in my signature. Then I read on a recent post regarding stem cells that a treatment depended upon the EDSS score that the neurologist said. So I'm thinking it's very important that my neurologist "shape up and determine my score" and get it into my chart -- who knows, it may become important some day- it seems so basic -- just thinking about his attitude makes me so mad.
So, I have a few questions. (1) Regarding persons on this site with PPMS reporting their EDSS score; does this score reflect their disability when they are experiencing an exxacerbration? (2) Should I insist on my neurologist determining my EDSS score?
Am I making sense?