Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the post, “Do you have trouble sleeping? Does MS keep you awake at night?” from Aug. 29, 2018. Have an experience you want to share? Leave a comment here or at the original forum topic.
Something that’s bothered me since my multiple sclerosis diagnosis in 2013 relates to my line of work: sleep medicine; specifically, sleep technology and patient education.
One of the challenges I faced getting diagnosed involved sleep problems for which I sought help years before I was diagnosed with MS.
For World Sleep Day on March 13, I wish to see multiple sclerosis and sleep researchers join forces to better understand these relationships.
Sleeping through diagnoses
In 2009, I went to my general practitioner with complaints about excessive daytime sleepiness (EDS) after face-planting into my laptop during a live session with a writing client.
At that time, I worked as a developmental editor and found it increasingly difficult to stay awake to do my job.
I followed the typical protocol for complaints related to EDS by:
- Filling out the Epworth Sleepiness Scale
- Attending an overnight sleep study to test for breathing disorders such as sleep apnea and movement disorders like restless legs syndrome
- Attending a multiple sleep latency test to test for narcolepsy
- Idiopathic hypersomnia (IH) or EDS without explanation (such as a medical condition or narcolepsy)
- Upper airway resistance syndrome (UARS), a vague sleep-breathing situation during sleep that doesn’t qualify as sleep apnea
I was offered no therapeutic options for IH, so I was stuck with daytime naps, coffee, and caffeine pills. My UARS was treated with an oral device I paid for out of pocket. Overall, my sleep breathing slightly improved but nothing chased away my EDS.
I finally quit working as an editor. I couldn’t work with confidence and efficiency thanks to a compulsion to nap several times during the day.
Connecting the dots comes later
I also didn’t know to recognize Lhermitte’s sign and Uhthoff’s phenomena as real MS symptoms. Nor could I predict a future of weird speech issues, walking with a swerve, the loss of my ability to read, and strange visual symptoms just a few years later.
It’s a no-fault situation, really. Even if I’d been diagnosed with MS, I’m not sure they’d have connected my sleep problems and EDS with MS. Or they might’ve blamed it all on MS without pursuing these “extracurriculars.”
That’s the problem with “silo science” these days. Doctors look so closely at their own constellations of expertise, they can easily miss other conditions existing outside their specialty, or they may simply lump them together under a single “other” condition.
My MS diagnosis explained the roots of most of my fatigue, cognitive problems, and more, thereby eliminating my idiopathic hypersomnia diagnosis. Two years after that, I nailed down a sleep apnea diagnosis. Using continuous positive airway pressure therapy (CPAP) and treating my MS have eliminated 95 percent of my EDS.
What if sleep was treated as a vital sign?
I can’t help but wonder.
The National Sleep Foundation continues to call for sleep history to be recorded as one of the standard vital signs every patient should be tested for at each doctor’s visit — no matter the specialty.
And then there’s this: People with MS exhibit higher rates of sleep apnea than the general population. Meanwhile, research on sleep-disordered breathing in people with MS shows great benefit from the use of CPAP to treat both conditions. And also importantly, if you don’t treat a sleep disorder, it might trigger an MS relapse.
I can’t help but wonder how many people with MS also have a hidden sleep disorder?
And what about all the doctors who never ask their patients about sleep? I know firsthand — as both a patient and healthcare professional — that many most certainly do not treat poor sleep as a vital sign.
Hence my wish for World Sleep Day, that doctors from various fields — even beyond neurology and sleep medicine — look up from their clipboards, ask us questions about our sleep, listen, investigate, and find better ways to connect the dots.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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