A person stands at the beginning of a long path that winds into the darkness

Second Verse Not Much Like the First: Transitioning From RRMS to SPMS

I had a class I had to take for my job. I knew where I had to be, and at least the car knew how to get there. When I was at the class, though, walking down the hall was hard – I kept lurching into the walls of the corridor, and then bouncing a few feet ahead. At the class lunch break, I ran into my friend. She took one look at me and said, “Are you okay?”

I couldn’t fool her. She steered me to her office, sat me down, and called my doctor’s office. He took one look at me and called my neurologist. Next thing you know, I’m in that doctor's office forty miles away, and he is explaining to me that I’m going into the hospital to start IV steroids. This was 1992, there was no such thing as a DMT, and I’d been living with MS since 1978.

Learning I had SPMS

I’d experienced ataxia, I couldn’t tell the difference between hot and cold. My leg often felt soaking wet, ants knew the way from my elbow to my wrist, and I kept forgetting to keep my toes pointed forward. Spasticity kept driving me into walls that were hard to separate from. I’d taken oral steroids for optic neuritis, but now my neurologist is telling me somebody is going to stick a needle in my vein and pump me full of what?

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"Can’t I just take it orally?” I asked, and he answered, “Sure. But you’ll never walk again.” Shortly after, his elderly secretary pushed me into a wheelchair and was trundling me to the neurology floor of Emerson Hospital. Within an hour, I’m in a gown, on the edge of a bed, and somebody is hooking me up to an IV bag of methylprednisone, and I’m in the midst of the most serious flare up of my 14-year-old case of multiple sclerosis.

At some point during my five-day hospital stay, the doctor informed me that I now had a case of secondary progressive multiple sclerosis (SPMS). So much for relapsing-remitting MS, it was a steady downward course from here on.

A dizzying array of new symptoms

That began an intense eight years of a dizzying array of new symptoms. I couldn’t make my left leg listen to my brain at all. If I wanted my leg to do anything, I had to physically move the appendage with my hands. I started to shake all over when anybody spoke to me, I had nystagmus, and I needed a new prescription for my eyeglasses about every six months.

My legs and arms were vibrating to a high frequency. I couldn't hear, and I could manage about fifteen minutes of upright activity before I had to lay down for a few days. The spasticity was exciting, especially in my left foot, which would curl into a tight curve and twitch. Eventually, I was handed over to physical therapy and spent nine months learning to walk again.

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Figuring out why I developed SPMS

I spent the next eight years figuring out a LOT of things about living with multiple sclerosis, most of which I spent at Andover Theological School trying to figure out. One thing I learned was that secondary progressive MS develops in something like 60% of people diagnosed with relapsing-remitting MS (RRMS).1

I eventually realized that the only reason I developed SPMS is that I must have been standing in the wrong place at the wrong time. The cumulative effect of fourteen years of inflammation and marinating my myelin in a heady combination of stress, and a ten-year-long sinus infection, finally broke the seal and ushered in sixteen years of progression.

But that’s not all there is to my MS story! This is just about what it’s like to move suddenly from RRMS to SPMS. You’ll hear about the rest another time, and thanks for coming along for the ride.

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