On March 27, 2013, my primary care physician called me about MRI results from the day before. He and the radiologist concurred; they had found evidence of brain lesions consistent with multiple sclerosis.
Following protocol, he sent me to the best specialist in Seattle to confirm diagnosis. His was a preliminary diagnosis. In the seven weeks to follow, I had blood work done, received a spinal tap, and participated in myriad other tests. I remember trusting him, feeling confident in this new finding. After all, it explained so much.
The journey to diagnosis
In 2010, I’d had two sleep studies after I found myself face-planting into my laptop during teleconferences with my editorial clients. I knew working moms were tired, but this was ridiculous!
I was diagnosed with Upper Airway Resistance Syndrome (UARS), a problem of broken sleep caused by allergies and postnasal drip. This ruled out sleep apnea and explained one source for my sleep deprivation.
I also was diagnosed with “possible idiopathic hypersomnia” (IH). In other words, I grew excessively sleepy during the day despite adequate sleep at night and they couldn’t explain why. This sort of ruled out narcolepsy; IH is often a basket diagnosis when root cause for severe daytime sleepiness, and other symptoms of narcolepsy is not forthcoming. My nap test wasn’t conclusive.
Treatment was limited to an oral device to open my airway during sleep, side-sleeping, more allergy drugs, and use of a personal steam inhaler.
My sleep doctors didn’t misdiagnose me. Without other MS symptoms presenting to raise red flags, they had no reason to look elsewhere.
In 2012, my sleep problems prompted my return to sleep technology school. The sense of uncertainty about my inordinate daytime fatigue prompted the lifelong journalist in me to ask, “Why?”
It was during finals before spring break that I noticed the paresthesias, leg tremors, and an inability to comprehend written words. My preliminary diagnosis did more than explain these, it gave me clarity.
The power of clarity
At the time, I was aware of the lack of research and solutions for both narcolepsy and UARS. An MS diagnosis actually broadened my treatment options.
Two good friends of mine have had MS for years. Both continue to lead active lives in spite of their illness. One works as a critical care nurse; the other manages an independent bookstore. Thanks to them, I never saw MS as an automatic “death sentence.” In fact, I felt more hopeful.
Later, I reviewed my own sleep study results with an educated eye. I discovered an unusual sleep architecture involving large amounts of REM sleep, and something called “alpha intrusion.” Basically, my sleeping brain was (and continues to be) “on the fritz” — but now I know why.
Reviewing a lifetime of symptom clusters, I also identified patterns suggesting I probably have had MS for most of my life. Maybe those “growing pains at age 9 were actually “MS hugs.” Who really knows?
All I know is that, at age 46, this suggests my progression is slow. My neuro says that with treatment for MS, I probably will live my normal life expectancy with most of my current function intact. Talk about hope!
Honestly, I was angry, too. The diagnosis came during a relapse at a time when I needed every brain cell I had to do homework. I faced a six-week, 200-hour practicum at the hospital, as well. But there was a bright side: I qualified for a modafinil prescription to offset daytime fatigue.
I also lost my appetite, had trouble sleeping, and cried a lot during the weeks I waited for confirmation. I developed “diagnosis brain,” a temporary shift in focus caused by the sudden, and irreconcilable awareness that your body is no longer yours to control. It wasn’t much different from “pregnancy brain.”
Why we need to honor the day of diagnosis
A friend once asked why I wished to “celebrate” a diagnosis.
Like childbirth, or the loss of a loved one, a chronic illness diagnosis marks a defining moment in one’s life that completely reshapes your sense of self.
I now see it not as a curse or a condemnation, but as an opportunity. For four years now, I’ve found strength in new challenges. I better understand and respect my limitations. I’m better at practicing self-care.
People with MS learn quickly that one never can assume what tomorrow will bring. Today is all there is. While I’m in remission, I remain in active pursuit of the life I want now. Despite ongoing symptoms, I’m still running on most cylinders. And that’s definitely something to memorialize.
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.