As a follower of several MS-related blogs, I get to know people through their stories and words online.  Doing so helps me to understand my own disease and to gain understanding of the different disease experiences of others.  It is truly cathartic.

This has also been great in learning about progressive forms of MS.  Talking to people who live it is more educational at times than reading the general information available online.  With that said, I’d like you to meet Mitch, a person living with primary progressive MS, who blogs at Enjoying the Ride.

Mitch, welcome to MS HealthCentral.  Please tell us a little bit about your MS diagnosis.  Had you had symptoms for years before seeing the doctor?  We are told that men generally delay seeking medical treatment.  What were your early symptoms?

Thank you so much for giving me the opportunity to talk about PPMS. I hope some people can benefit from my experience.

In the late winter of 2000, as I was jogging on my treadmill, I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn’t quietly go from heel to toe. It made a flapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to.

I didn't think a lot of it, but it did occur to me that I hadn't had a general physical in a long time. In the summer of 2000 I scheduled a physical, and mentioned this left foot problem to my doctor. He immediately suspected MS, and scheduled an MRI. The MRI showed only one small lesion in my brain. My general practitioner sent me off to a neurologist for further workup.  Long story short – I went through two neurologists, a back surgeon, a new general practitioner, and a slew of tests before I got my diagnosis in October of 2001. I guess as MS diagnosis stories go, a year and a half from first presentation of symptoms to diagnosis isn't too bad.

That sounds like a long and complicated journey.  How long did it take before you knew you had Primary progressive MS (PPMS) instead of the more common form of relapsing remitting MS (RRMS)?  Who made that determination, you or your doctor?

I received an initial diagnosis of Primary Progressive MS. I think this is unusual. More commonly, a PPMS diagnosis only comes after a considerable period of observation. However, my neurologist, to his credit, didn't waste any time. Based on the characteristics of my lesion load (significant lesions in my cervical spine, few lesions in my brain), my symptom presentation (slow steady decline in leg function with nothing resembling a relapse or remission), and his clinical experience, he went straight to a diagnosis of PPMS. The passage of time has confirmed what others might have considered a premature diagnosis.