I've been told that there are actually more considerations than finance with PPMS trials. They really understand it so much less which is scary considering how little they understand about RRMS. The damage is harder to monitor on MRI than RRMS, so they can't determine success by affecting lesion load. They also can't look at a reduction in relapse rate to measure success. It just makes it very hard to design a research study that can get funded. Am I making sense?? I know what I'm trying to say, but getting it from the brain to the keyboard isn't easy today.

My lesions are very atypical for RRMS, but look more like PPMS, however I have obvious relapses and remissions. I respond well to IVSM unlike most people with PPMS, so I am a mystery. My neuro doesn't want to label me PPMS because I don't fit that, but my lesions don't fit the other, so he calls me atypical MS. He honestly does not think that ANY of the current approved DMD's would help me at all, just like they don't help PPMS. It's such a weird disease with strange manifestations.

If he told me tomorrow that he thought Tysabri would work for me, I don't honestly know what I would do. I have several friends who are on it, but I don't know whether I would be so brave. I can see that the odds are actually improving over time from what they originally published, but I think I would like a couple more digits on the one side of that ratio.