The Slow Scope Creep of Multiple Sclerosis

Little by little, MS takes more and more from me.

Years ago, when I worked for a health communications firm, my manager would remind our team to be careful about “scope creep.”

If we were under contract to design a poster, for example, she’d say that’s all we were to do — just the design! We couldn’t help the client with the printing, mailing, or promotion.

Even if new asks were small and happened slowly over many weeks, my manager eventually warned that scope creep would catch up to us. We’d find ourselves not making the budget because the poster design had morphed into a much more complicated project.

I don’t have that job any longer, but I do have MS.

The concept of scope creep has never resonated more for me.

Join the free MS community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

A task hard as nails

Last April, I decided to paint my nails. But holding that tiny nail polish wand had become more difficult with only minimal sensation in my fingertips. Still, spring had sprung, and my nails were nude. I grabbed an emery board and ElePhantastic Pink and set up shop on the table out back. If I wasn’t certain I could complete the task, I was at least hopeful.

But the brush slipped through my fingers too many times and tumbled downward. Too many times, ElePhantastic Pink splattered onto the flagstone slates below.

Ultimately, my nails and my patio resembled a toddler’s first drawing. I brought out the nail polish remover, erased all signs of my mayhem, and dumped everything into the trash.

And so, more than 40 years of doing my own manicures ended.

It wasn’t a big deal to me, honestly. I rarely wear polish these days, and the professionals at the shop across the street could do a better job when needed.

But it was just another thing MS took over.

Scope creep.

The slow build

In the first few years after my diagnosis, my singular symptom was numbness. When I was warm, my hands and feet would occasionally lose some feeling. It wasn’t really a problem as much as an annoyance.

But gradually, things changed. My fingertips started feeling numb more often and putting on jewelry or buttoning buttons became more difficult. But again, it was not a big issue. My husband was happy to help.

Then, my heat sensitivity intensified. Tennis, rollerblading, and yoga fell off my list of hobbies. Almost all forms of exercise rendered me dizzy and weak, so I joined a pool. The water kept me cool, and I had always loved swimming, so the problem was solved again.

Through it all, I remained pretty nonchalant about my symptoms.

But then the pain started. First, there was a slight pain in my legs late at night. Then, there was a slight pain in the morning, too. Eventually, I was aching throughout the day. It got harder to put on a happy face.

Kaboom

And then, one evening, I found myself rolled up into a ball, hugging my lower limbs. The pain was so great that I could barely catch my breath. Were my legs set on fire? Had they been crushed by a truck?

My neurologist prescribed pain medication, of course. And it did help. It did dull the throbbing.

Usually, anyway.

But when it didn’t?

Wow, just wow.

And so it goes

Today, my positive outlook wanes at times, with leg pain just one of many hard-hitting symptoms.

MS-related inflammation now occasionally impacts the right side of my face, causing a throbbing eyeball (so I’ve ditched my contact lenses in favor of glasses) and a throbbing eardrum (so I sometimes walk laps in the pool instead of swimming).

And don’t get me started on bladder urgency. A few years back, I would occasionally wake once at night to use the bathroom. Now, it happens three times each night.

Barely, almost imperceptibly, and ever-so-slowly, MS is unfolding.

Scope creep.

It is what it is

We all know the realities of MS. While scientists are working feverishly to find ways to prevent, slow, stop, and cure it, MS remains a chronic degenerative disease. We can’t deny the facts.

Once, my neurologist went back and reviewed my first MRI, which was completed two decades earlier. He was amazed. There was no way, he said, that I would still be able to walk independently if not for the disease-modifying therapy (DMT) I was taking.

It was a lightbulb moment for me.

Yes, my laundry list of symptoms gets longer every year, but it could be so much worse. I am lucky to live in a time when treatments are truly effective, and researchers offer genuine hope. I am lucky to be able to afford air conditioning, a pool membership, and a manicurist.

Coming to acceptance

I imagine scope creep will continue. With each new setback, I will feel sadness, frustration, and maybe even anger with each new setback.

My once-sunny outlook definitely darkens sometimes now. But eventually, I will find acceptance.

I have to. What choice do I have? What choice do any of us have?

We are MS warriors, after all. New symptoms may creep up on us, and we may recoil momentarily.

But our resolve does not budge.