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 forum post, “Do you have eye issues due to MS?,” published Oct. 28, 2018. Share your concerns, questions, or experiences in the comments below or at the original forum entry.
It started a long time ago in childhood (I’m 55, so that was decades ago!). My eyes would suddenly track back and forth in rapid succession, almost like a tic or tremor or seizure, and I’d lose my focus and suddenly feel seasick.
Because it’s happened so many times throughout my life, and because it started so early, I thought it was normal — as in “the human body has its quirks and we just live with them” normal.
The MS Trust describes nystagmus as “the involuntary movement of the eyes, causing them to flick rapidly from side to side, up and down, or in a rotary manner.”
I always thought of it as having “shifty eyes.” In fact, for a long time, that’s precisely what I thought the definition of “shifty eyes” was, purely biological and wholly uncontrollable. It wasn’t until adolescence that I learned that “shifty eyes” described intentional lack of eye contact.
I experienced a spate of “shifty eyes” just yesterday, so today I want to take a closer look at nystagmus (pun intended).
Not just an MS symptom
According to research data published by the Nystagmus Network, about 13% of people with MS experience acquired pendular nystagmus (APN). It can also be the first presenting sign of MS for some, according to ophthalmology researchers. APN is a form of nystagmus that develops any time after early infancy.
I remember feeling these “shifty eyes” during my elementary school years. Specifically, I recall a late spring day in which I sprawled across the lawn, smelling newly mown grass and reveling in the sunshine. Suddenly, my eyes performed this strange optical dance. Weird.
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