It started on a Tuesday and I remember the exact day because it happened in the middle of a three-hour evening college composition class that I was teaching once a week. I was reviewing an essay assignment with the class when it set in, what I thought was one of the worst headaches I’d ever had.
I ended class early, drove home, took three ibuprofen, and went straight to bed without eating anything. I knew the headache would be gone in the morning.
Except it wasn’t gone the next morning and it didn’t subside all week. The pain was acute and unlike anything I’d ever experienced. I didn’t know how to describe it beyond a strange headache, behind my left eye, that wouldn’t go away. Jeremy, my fiance at the time, thought it might be a sinus infection and bought me Sudafed. The Sudafed did not help. Ibuprofen did not help. Other painkillers did not help. Warm compresses did not help. Sleeping did not help.
No matter what I did, I could not alleviate the pain.
On day seven of pain, I noticed that with my left eye the color yellow looked off-white and the color red looked brown. It confused me at first. I am used to some double vision, having lived with amblyopia (more commonly known as a lazy eye) in my left eye for my whole life. It was normal to me that my left eye didn’t see as well.
But the color change was new, and I knew that with the pain and vision change something was wrong with my eye.
Jeremy called his eye doctor and got me an appointment right away.
The news at the eye doctor was devastating: optic neuritis.
I needed an MRI right away, the eye doctor said. It could be a sign of multiple sclerosis (MS).
Optic neuritis, inflammation of the optic nerve, is often an early indicator of MS, a disease affecting the central nervous system. It causes the myelin, the protective sheath around the nerves, to deteriorate and lead to nerve damage. Symptoms range in severity from fatigue and tingling to numbness and paralysis, depending on how aggressively the disease progresses.
Shocked by this news, I left the eye doctor’s office in tears, called Jeremy and asked him to come home right away. I didn’t know anything about MS and couldn’t imagine what my life would be like if that’s what it was.
The optic neuritis subsided after seventeen days and my vision returned to normal. I had my first MRI less than one month after seeing the eye doctor and it revealed lesions on my brain. Lesions indicate where in the body the deterioration of myelin is happening.
I was diagnosed with MS eighteen months later.
After the diagnosis, I experienced numbness in my left leg for about six months and it took about a year to find a health management protocol that works for me. My treatment now consists of a modified diet, supplementation, exercise, stress management, and regular visits with my care team. Fatigue continues to be a constant challenge, but this protocol has served me well and I have not had a medically qualified MS relapse for almost six years.
Although the journey from discovering the optic neuritis to being diagnosed with MS has not been easy, I find healing in sharing my story as a way to help others see that health and wellness is possible for them as it is for me.
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Janna Maron is a an advocate for the healing power of storytelling and she’s currently working on her first book. Follow her on Instagram @jannamarlies.