Symptoms Worse, EDSS Better???

I have been tracking my symptoms since I started in the trial. I have made a few adjustments, as what I thought was bad last year, wasn't nearly what I anticipated.  Interestingly enough, even though I added additional issues to my EDSS interview, my score got better from a 4.5 to a 4.0. I know for a fact that my MS symptoms have gotten significantly worse in the last 6 months. The good news is that there are no new findings on the MRI.  However, my good and bad days have been pretty erratic. You can see from my tracking worksheet that I've had some pretty bad days. I'm not sure how long I'll need to wait to see if my situation gets worse, but I'm committed to finishing out the study for now.  Today, the day after the infusion was very challenging. After the 1st infusion, I rebounded pretty well due to the steroids.  Not today.  I really struggled, and even fell hard tripping at the gas station today.  I had my dad in town helping with yard work, and felt helpless that I couldn't do anything.  I love the help, but hate the feeling of helplessness and being a burden on anyone. Don't get me wrong, I love seeing the others who are helped by Ocrelizumab, and hope that I'm just a slow learner.  Now I wait for a few months to see how it progresses. 

EDSS Score: 4.0

Tracking Levels and Symptoms

My symptoms have progressed enough in the last six months that it's hard to pinpoint when different things started happening. I decided that throughout this trial of Ocrelizumab, I would track the symptoms in a spreadsheet to see if there is any improvement or decline over time. I'll use a google spreadsheet that will be open to anyone, and eventually create charts to graph the progress. There is a quick link on the side of this page, but you can click here to view the baseline spreadsheet.

I'm hoping to see these numbers decline after I get the treatment, but understand that there are no guarantees. Yesterday was a particularly difficult day, MS wise, so it's a good starting point. I realize that there is a definite potential that things could get worse, and at least I'll be able to see the trends for my most common symptoms.