I'm so pleased that there is a PP/SPMS "mini-site" here, as I have been searching and searching for a place to talk to other PPMSers and had no luck - until now.
Here's my story: had first symptom (partial numbness in right leg) 18 1/2 years ago and within a few days I had partial numbness in both legs and up to mid-torso. I just kept adding symptoms that were fairly mild at first for several years. I went from dr to dr to dr for TEN years and even had spinal surgery (for compression at C4/C5) which did nothing to alleviate any symptoms. I finally SELF-dx in 2003 because I read-up and researched and knew it must be some type of MS, but it still took 3 more drs and 2 more years before I got a neuro to do an LP and a VER (rather than just another MRI) and even he said: "You PROBABLY have PPMS." As you know, this dx is a "negative" one; meaning, you rule out everything else under the sun, do a zillion tests, add up years of symptom history and say "hmmm, we know what it isn't, so I guess it's PPMS." You see, I have NO brain lesions, so every dr was convinced it couldn't be MS. WRONG!
I am now a triplegic, use a power chair full-time and need help with 90% of daily tasks. Thanks for listening!