Unexpected Turns: Navigating the Transition from RRMS to SPMS

Being diagnosed with relapsing-remitting multiple sclerosis as a teen was enough of a shock. Just when I thought I had it under control, it changed to secondary progressive multiple sclerosis.

There I was, sweet 16 years old with a full scope of goals and dreams ahead of me ─ and wham! A white fog descended over my field of vision, blurring my sight and my future.

This strange symptom started as a gradual loss of vision in my right eye. When I eventually mentioned this to my mom, she rushed me to the emergency room in a desperate impulse of worry.

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Early symptoms and diagnosis

“Optic neuritis,” they said ─ in other words, inflammation of the optic nerve, resulting in blurred or reduced vision. They told us that it’s often an early sign of multiple sclerosis (MS). It was the first time I’d heard of MS ─ a chronic autoimmune disease that affects the central nervous system.

After several appointments with a slew of specialists — both local and out-of-state — involving exams like MRI tests and spinal taps, I was diagnosed with early onset relapsing-remitting multiple sclerosis (RRMS). RRMS is the most common form of the disease, characterized by unpredictable flare-ups of a wide range of symptoms, followed by periods of remission.

The medical landscape was vastly different back in 2004. There were still so many more questions and unknowns about this illness, and medication options were quite limited. As a young person confronted with a stuttering nervous system and high school exams, I had no clue how to manage any of it.

Living with RRMS

After my diagnosis, my neurologist prescribed one of the few disease-modifying therapies (DMTs) available for MS back then, an interferon called Avonex. Interferons are proteins that regulate the immune system’s response to viruses and autoimmune diseases like MS.

It was a once-a-week intramuscular injection. The side effects left me feeling drained and sick with flu-like symptoms for a full day after each dose. I had to designate Sundays as my medication or sick days so I wouldn’t miss school. If I was otherwise symptom-free and in remission, I only had to think about my MS once a week, on Sunday medication sick days. At least that felt like a win.

Despite the medication, however, the relapses continued. Every 4–6 months, a new wave of symptoms would hit me, such as numbness in my fingers and feet, crushing fatigue, tightness in my torso, known as the MS hug, and sharp pains in my head and neck, known as MS zingers. With every relapse, I visited my local hospital for treatment — a dose of intravenous (IV) steroids to calm the inflammation caused by damage to my immune system. I frequented the hospital so often that I made friends with the nurses.

About a year and a few follow-up exams later, my neurologist suggested trying another DMT, Betaseron. The idea was that maybe I would respond better and have fewer relapses with another type of medication. This injection was every other day. Along with the big welts it left on my skin, it was a more consistent day-to-day reminder of my illness. I stopped wearing shorts for a while to hide my bruised thighs.

A sense of normalcy

At some point after graduating high school, the frequency of my relapses slowed. I was in remission more often, and I felt good. I was finding my independence, and I embraced a healthy lifestyle.

Confident in my ability to manage my symptoms independently, I gradually stopped taking my meds. I was discreet about it, hiding the boxes of injection needles under my bed. That helped prevent questions from family or friends and made it easy to avoid thinking about my illness altogether. That felt like a relief, a sense of normalcy.

I even stopped going to my neuro follow-ups, eventually losing touch with her.

To compensate for neglecting the prescribed management of my MS, I adopted other healthy habits, like eating more greens, juicing, and engaging more in yoga and other fitness activities.

Since the aggressive rate of my relapses had relaxed, I considered myself healthy and in control of my illness, but really, MS was quietly thrashing my immune system while I took comfort in my green smoothies.

Those glory days of remission lasted about a decade — until I started to notice I was tripping a lot. I finally decided to get an MS checkup.

Progressing to SPMS

After asking me to perform a quick walk up and down his hallway, my new neurologist noticed it right away: foot drop — difficulty lifting the front part of my foot. My right leg was swinging to the side, although it was so subtle I hadn’t even noticed a change in my gait.

Soon, after another round of labs and an MRI, I was re-diagnosed with secondary progressive multiple sclerosis (SPMS), a new phase of this debilitating disease that occurs when there is a worsening of disability over time without relapses.

I was being confronted with what I had always feared: disease progression. SPMS snuck up on me gradually without my noticing.

SPMS introduced me to a new array of DMTs, each offering a different approach to managing my symptoms. Gone were the days of painful injections, now replaced by regimens of pills and infusions designed to slow the development of the disease. At least I didn’t have to give myself painful shots with harsh side effects anymore, so managing and living with MS wasn’t quite so challenging.

While the treatment landscape had evolved since my initial diagnosis, the silent arrival of SPMS brought new symptoms and posed other undeniable challenges.

Changing symptoms

Unlike RRMS, with its intermittent flare-ups, SPMS brought a constant barrage of new symptoms that affected my daily life.

I became more consistently fatigued, though the intensity varies from day to day. I also developed problems with balance, and now I occasionally stumble and “hallway pinball,” slang for leaning on walls and corners for stability.

I developed a cluster of less common symptoms, including nystagmus (rapid eye twitching), dysphagia (trouble swallowing), and sudden fits of laughter from a condition called pseudobulbar affect.

Even depression has entered this current phase of my MS.

Other symptoms became more consistent and troublesome.

For example, with RRMS, rather than forgo a day at the ocean completely, I would simply go to a beach with umbrellas so I could seek cool refuge and avoid overheating.

Nowadays, I can’t even park more than a few steps from the entrance to a business. Walking along a steaming asphalt parking lot under the South Florida sun is no longer an option. It’ll make me feel exhausted for the rest of the day. I have a disability parking decal now that allows me to avoid this.

Changing needs

Some of my needs became more complex as my physical abilities gradually declined. Simple tasks that I once took for granted became challenging, requiring careful planning and accommodation.

For example, now, when I get in and out of the bathtub, I have to concentrate to make sure my legs feel steady first and remember to use the handrails I’ve installed.

I’m less likely to join social activities — especially if they’re in a warm outdoor environment, which can easily fatigue me. I usually won’t go to anything that involves drinking, either, because sometimes even having just one drink can cause balance issues for me. I also limit my outings to a maximum of a half-day so I don’t risk overexertion.

I now rely on a multidisciplinary care team, too. Besides my neurologist, I also have a podiatrist, a physical therapist, and a psychologist. They’ve prescribed tools for support, like a cane, custom-made insoles for my shoes, and practices that I’ve now turned into habits, like mindfulness exercises.

Sleep is also far more necessary for me than before. While once upon a time, I could host cocktail parties and attend late-night shindigs — and still feel OK with one day of rest afterward — I now have to stick to a solid sleep schedule to maintain my energy for the week. A bad night’s sleep turns into several days of exhaustion thereafter.

At first, this new stage of MS made me frustrated and angry, and I felt stuck with my evolving disease without knowing how to deal with the emotions that accompanied it.

Now that I have psychological support, I’ve learned to maneuver around my fluctuating symptoms, adapting my needs as required and forgiving my body for these maladies.

The takeaway

With RRMS, I danced between aggressive relapses and hopeful remissions tied to hospital visits and medication schedules. Yet, moments of respite offered a semblance of control over my health, or so I thought.

Later, SPMS marked a new chapter in dealing with this condition, filled with persistent symptoms and a gradual decline in my physical abilities.

I’ve learned the art of adaptation, embracing each phase as I navigate the complexities of MS.