A woman gazes up a dark night sky filled with stars. Some are connected by dotted lines to show parts of a story coming together like a constellation, but there is also cloudiness and unknown.

Pain and Sleep Disorders: Two MS Early Warning Signs?

Whether you’ve lived with MS for a couple of decades or have been diagnosed recently, there’s one question you’ve probably attempted to answer: “When did my MS begin?” It’s the same question one Harvard study attempted to answer in January of this year.

Some interesting observations emerged from this research:

  • Clinical onset of MS was preceded by increased levels of neurofilament light chains (Nfl), now considered potential biomarkers of MS disease.2
  • Related studies show that people who eventually become diagnosed with MS exhibit distinct patterns of doctor visits highlighting specific health problems that could be telling the story of emerging disease.3

Changes in the nervous system before symptoms appear

The Harvard study concluded that “changes in the nervous system related to MS begin well before there are perceptible symptoms, offering hope that there will be a way to predict and prevent MS before it becomes full-blown disease.”

For many of us, the answer to the question, “When did my MS begin?” remains elusive, however. I wasn’t diagnosed until age 47, but looking at clusters of symptoms throughout my life, it might be accurate to point to the summer right before I turned nine and experienced my first ever MS hug.4 Could it have started then? Maybe, though it’s highly unlikely I’ll ever be able to prove it.

Studying possible warning signs of MS

Even if knowing when our MS started doesn’t change how we live with this unpredictable disease today, it’s useful to study possible early warning signs for others currently experiencing emerging stages of MS.

Studying these pre-diagnosis details involves looking at prodromes — what the National MS Society calls the “a constellation of early signs or symptoms of the disease.”5

Recent research has unveiled two potential prodromes that could be early indicators of MS.

Prodromes in MS

In April 2020, Multiple Sclerosis Journal published a research paper suggesting “increasing evidence of prodromal multiple sclerosis (MS).”6

In this particular study, a review of the records of more than 35,000 people with MS determined two specific symptoms or signs of MS to be more prevalent than others: pain and disordered sleep. (The other two symptoms or signs studied? Fatigue and anemia, though they were less prevalent.)

Pain as MS prodrome

People who developed MS were more likely to consult a physician about pain problems in the five years before their diagnosis, the study found. Pain problems were also more common and occurred more frequently as prodromal symptoms in people diagnosed with MS later in life.

Sleep disorder as MS prodrome

The study also found an elevated occurrence of visits to sleep specialists to ferret out any hidden sleep disorders in the five years prior to MS diagnosis. Among those sleep disorders? Obstructive sleep apnea, restless legs syndrome, periodic leg movement disorder, REM behavior disorder, narcolepsy, and seasonal affective disorder.7

Detecting the signs before a flare

If you experienced pain or sleep problems within the years that led up to your eventual diagnosis, wouldn’t it have been great to take that information and use it to expedite your doctor’s investigation into your symptoms? Might it have meant a shorter time span could have passed between your early prodromal symptoms and a full-on flare?

Who knows? I saw a sleep physician for sleep problems four years prior to my diagnosis. Because sleep and fatigue were the only presenting symptoms at the time, nobody thought to look for anything else.

MS symptoms vary widely

And maybe this will always be the case with MS. It’s so crafty… a shapeshifter of symptoms that vary as widely as human beings do. Pain and sleep disorders are already so common, it may be impossible to link them to an emerging case of MS without going to a lot of fuss and expense.

Why participating in research matters

But this does make the case for participating in research, at least by adding your particular medical details (anonymously) to an MS registry.8

The National MS Society speaks to the value of this research when it states at its website that “defining the constellation of hidden signals and biological markers of the MS prodrome will eventually enable earlier detection and treatment to prevent full-blown MS, and can also provide clues to the underlying causes of MS.”5

Pieces of the MS puzzle

Through these datasets, more pieces of the MS puzzle can still emerge. This could mean shortening the wait for a confirmed diagnosis for so many who may go without a diagnosis or treatment for years. I would love it if my data could help someone else with emerging MS to undergo a more streamlined diagnostic experience leading to earlier, proactive treatment.

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