First, I'll state that I realize how unique PPMS and MS is in general from one person to the next. I also realize the EDSS is only somewhat useful and people often go up or down on the scale over time.

I was diagnosed in December and at the time, best guess, I was around an EDSS score of 4.5. As of today, that's closer to 6. I am being treated by the MS Center at one of the best hospitals in the nation with close ties to the university. The problem is I haven't been seen more than twice, but also feel I'm declining faster than most. I haven't received a professional evaluation in terms of score. My doctor is still trying to find meds that help with the symptoms.

Exercise knocks me out for days. I recognize a few combinations of conditions that make matters worse. The problem is finding useful information, even if it's best guess.

1. How fast can it progress?
2. Are there certain symptoms that are more indicative of a decline?
3. Is there any way of determining rate of decline?
4. Are there any rules of thumb for when to take certain measures?
5. There is a lot of mention/references to time based on when diagnosed, but does that assume it was diagnosed in a timely manner? For example, I'm convinced it was missed for 10+ years. Others are diagnosed far faster. When does the clock start?

The bottom line is I want to be able to avoid future crisis, but without wasting too much time worrying about it versus enjoying life. I'm 50 now and want more balance, but with the perceived rate of decline, I'm trying to get an idea of where my focus needs to be. I avoid reading too much about symptoms to avoid somatic factors.