Living Well with MS: The Long Road to Diagnosis
Living with multiple sclerosis is not something which anybody, young or old, dreams of doing someday. But LIVING WELL with MS is something which many a diagnosed person aims to do, everyday. I know I do.
The majority of persons who develop MS experience their first symptoms in their 20’s or 30’s. That was the case for me as I experienced unexplained vision problems and depression while I was working on my doctoral music degree at Indiana University and again at age 31. Now I am a professional french horn player who performs and teaches horn and piano in my home music studio and happens to have MS.
Shortly after moving to the Washington, DC area to pursue a career as a freelance musician, I began performing with the Baltimore Opera Orchestra. In March 2000, the opera was performing Wagner’s Tannhauser and I was part of the backstage horn section.
One morning during the first week of rehearsals, I woke up and couldn’t see well out of my right eye. The world appeared as though my glasses were smeared with vaseline and colors were fading. It was rather disconcerting as I became temporarily blind. I was diagnosed with optic neuritis and it was two months before my eyesight returned to normal.
Optic neuritis is an inflammation of the optic nerve which connects each eye to the brain. It can occur as a neurological attack in multiple sclerosis and is often the first demyelinating event leading to an MS diagnosis. But it can also happen as a onetime event caused by something as benign as a really bad cold (post-infectious optic neuritis).
After the MRI results came back in 2000, my neuro-opthalmologist diagnosed a single event of post-infectious optic neuritis as no evidence of demyelination was visible in the brain or around the optic nerves. I didn’t have MS.
With only one good eye, it was difficult to “keep one eye on the conductor and one eye on the music.” Another horn player backstage was kind enough to help me out. She was also wonderful to talk to as it turned out her mother has MS. Looking back on it now, I wonder if there was anything about the disease my friend would have shared if I had been diagnosed with MS at that time.
It wasn’t until 2005 that I was finally diagnosed with MS. During those five interim years, I lived blissfully unaware of how MS was very subtly appearing as periodic weakness in my legs or bouts of fatigue – both common symptoms of the disease.
After numbness, tingling, and weakness developed in my left arm and hand, I was referred to a neurologist in May 2005. On my first MRI scans, there was one moderate sized lesion in my neck with a much smaller one nearby. My brain was clear of lesions as it had been five years previous. I wasn’t diagnosed with MS until a few months later after the tiny lesion in my neck grew larger and a new lesion developed.
When I began having new symptoms seriously affecting my legs and mobility in 2008, it turned out that the three lesions in my neck had grown together to make one large lesion spanning 2-3 vertebrae. Yikes. Yet my brain was clear of any evidence of demyelination as it still is today. For the past five years, my MRI scans have remained stable with no changes.
Good news, but that doesn’t mean that I haven’t experienced symptoms. New lesions do not necessarily mean new symptoms just as new symptoms do not mean new lesions are present.
MS is such a bizarre disease. But fortunately, having MS doesn’t prevent you from living well and pursuing dreams. Let’s talk about how we each live well with MS.
What do you do to live well with MS?
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