I was diagnosed primary progressive with one lesion in my cervical spine, and one tiny lesion in my brain (right periventricular). I have had numerous lumbar punctures, all negative. My MRIs have been absolutely stable (no more lesions, no less) since the first one I had in May of 2003.

Since I'm primary progressive, I have never had an attack, only a slow steady progression of disability. In 2003 I first presented with a slight limp in my right leg. Five years later, my right arm and leg are entirely useless, and my left side is weakening as well. I also have the usual bowel and bladder issues.

I've had my diagnosis verified by several different neurologists (including some of the biggest names treating multiple sclerosis), all of whom comment that although my presentation is highly atypical, they would still classify me as PPMS since I don't really fit any other disease model. Nevertheless, I am still uncomfortable with my diagnosis, and question it daily.

Whatever it is that I have, it sucks, and it's getting worse.