Patient Blogs | Multiple Sclerosis
Living With Secondary Progressive MS
Female doctor examining female patient

Like a lot of people with MS, I was initially diagnosed with relapsing-remitting multiple sclerosis (RRMS). It’s common to be diagnosed with RRMS from the get-go and gradually evolve to secondary progressive or primary progressive MS. But I was told that the average patient could take around 10 years to transition to secondary progressive and 20 years to primary progressive. I was OK with that. I figured that in 20 years, I’d be 58 and already had a good run. Well, to my surprise, that wasn’t the case.

Within 3 years, I started to deteriorate, and it hasn’t stopped ever since. Then the MS Society finally made a public statement that MS doesn’t go into remission, something I already knew. Therefore, one “R” from RRMS (relapsing-remitting multiple sclerosis) was being removed. From now on, it’s referred to as just relapsing multiple sclerosis, or RMS.

I always felt that my MS was very active and never went into remission. It still feels that way. Now, they finally agreed with me. During those uncertain years of inexplicable deterioration, I experienced gait problems, lack of balance, foot drop. I started to use a cane, eventually a rollator walker, and ultimately a scooter. Currently, I wear a KAFO (knee, ankle, foot orthotic) that keeps me away from those mobility aids and allows me to maintain my independence.

Living with SPMS feels like being in limbo. You’re right in the middle, there’s no disease-modifying therapy specifically for it, no disease activity (stable MRIs), but still gradual deterioration. They even came up with a name to help us understand the unexplainable: PIRA (progression independent of relapse activity).

I’ve heard from several MS-specialized neurologists that they don’t use the categories RRMS, SPMS, or PPMS anymore, because MS is not black and white. For example, somebody with SPMS could present MRI activity, and it doesn’t necessarily mean that they’re transitioning to PPMS. But we MSers need to have an idea of where we’re at, while new molecular biomarkers are established.

Going to the doctor to hear that everything is fine and stable, there´s no signs of disease activity on the MRI, but still, there´s evidence of clinical disability, is very frustrating. Your neurologist is happy with how things are going, but you’re not quite pleased. It´s a general feeling among us living with SPMS.

I´m not sure how much longer I´ll be able to walk. The uncertainty this brings into my life is painful. I feel like I have so much to do and so much to live for, and not knowing what to expect or how soon to expect it eats me up alive. As frustrating as it is, I try my best to stay positive and live my best life, one day at a time.

I´ve seen how ruthless MS can be. It deteriorates me faster than I can recover. I´ve done everything they’ve told me to do: my infusion every 6 months, physical therapy, good nutrition, exercise, mindfulness, meditation, self-care, etc. Nothing has stopped it. All these tools have helped me manage my symptoms better, no question, but the progression continues. 

It's the feeling of being powerless, vulnerable. I have zero control over the outcome of this madness I’m in, unwillingly. Where do you draw the line between SPMS and PPMS? Will I get the memo ahead of time? It’s a race against time, and time is the only thing you can’t recover.

I recall having a few pseudo-flare-ups during the first years of my diagnosis, when I was still considered RMS. But I never had major episodes, like I’ve heard from others, that required hospitalizations. That makes me think: Maybe I was already at the SPMS stage when I was diagnosed, since flare-ups are less frequent, sometimes nonexistent, in progressive forms of MS. 

Plus, now that I can clearly identify MS symptoms, I recognize having numbness on my hands and face, joint pain, back pain, headaches, mild slurred speech, and eye pain when I was in my 20s. I would drop things constantly too. I also remember having the infamous MS hug, the hug no one desires, when I was still a little girl. 

For years, I could notice my body kind of leaning to the right, and that could cause pain. At night, if I lay on that side, it would hurt. I would constantly find myself weight-bearing to the right, and I had to straighten up my body. Ironically, when I had my one and only big MS attack, the side that went paralyzed was the right. Now, with the weakness and atrophy I’ve developed, my posture looks sideways and unbalanced.

So, all those signs are clear indications to me that MS has been silently living in me for longer than I thought, and by the time the doctors caught it, it had already evolved to SPMS, they just didn’t name it as such. I guess I’ll never know.

Secondary progressive multiple sclerosis is a gradual but steady progression of disability due to nerve damage. It’s an emotional phase of the disease, due to the debilitating physical and cognitive changes and loss of functions that occur during this transition. 

I quickly went from being fully functional to fully disabled. There was no warning, it just happened. One day I woke up with severe foot drop. I couldn’t walk without assistance anymore. The weakness of my big muscles surrounding my hip and glute, that I’ve lived with for years, finally took its toll on the muscles on my leg and ankle, and my walking days were over.

It's scary to witness from first row how a disease like multiple sclerosis can cause such damage so fast. It makes me wonder: Where is this going to? How far will this go? How will I be doing in 10 years? I’m sure I’m not the only one asking those questions. But, whatever the future holds, I’ll face it with dignity. For now, I’ll keep doing my part, creating awareness and being an active member of the MS community, until we find a cure. 

 

To connect with other people living with multiple sclerosis join our MS Facebook Support Group.

 

 

 

Photo Credit: Morsa Images / Digital Vision via Getty Images

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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