It’s October in Northern California. Indian Summer. The sun is shining, the sky crystal clear, tropical plants and palm trees glisten against the blue of San Francisco Bay, the air is warm and still. Everything is just as Mother Nature intended. I’m busy doing mum stuff while the kids are at school, folding laundry, preparing dinner. I stand still, acutely aware something is different with my vision. I can only see clearly through the center of my eyes, my peripheral vision is blurry. I check I’m not imagining it by looking from side-to-side, yes, blurry. I try again, definitely blurry, and this time a shooting pain sears through my eyes as they smash against the sockets. A dazzling red portrait of my son catches my attention, but the red has faded and is muddy and dull. My eyes scan the room, I watch as it turns into a tunnel of black and white.
This was my first experience with optic neuritis, which happened a few years after my diagnosis. Optic neuritis is the inflammation of the optic nerve and according to Cleveland Clinic Neurological Institute is the first symptom for 20% of people with MS and occurs in almost half of people with MS, and for a few, 3%, it may cause blindness. It can happen in one eye or both, can be excruciating or not, the blurriness can cover the whole eye, center or side, and color may or may not fade.
I was lucky, my sight returned to normal. My neurologist ordered me three days of intravenous steroids followed by a month to taper off. [With MS when someone is having an episode immediate treatment is important to try and prevent scarring and thus permanent damage to the nerve.] However, others may not be so lucky and live with blindness, partial blindness and/or pain. I was also lucky because I knew optic neuritis was a symptom of MS, so knew to call my neurologist that same day. Going through watching your vision change so drastically and being in that much pain with no clue what is happening must be terrifying.
It took a couple of weeks after I started the steroids for my sight to return which was another trip. Just as I had watched as it narrowed and faded, I saw it return to glorious technicolor. Over a few hours it widened and the red painting became vibrant once more. It was beautiful.
During my 21-years with MS I’ve had two episodes of optic neuritis and both times my vision returned to normal after steroids. I was, however, surprised to discover a few years ago that a chair I’d bought was navy blue when I was sure it was dark grey. I’d lived with it and decorated around it in two homes. It was only when we were packing to move once again and I asked my daughter to put something on the “grey chair” I discovered I could no longer differentiate between dark blue, grey and black.
In a recent eye exam the optician and I were discussing my optic neuritis episodes which happened in the 2000’s. He explained that new studies have shown that steroids (only) help 50% of optic neuritis attacks, so (US) neurologists have been advised not to prescribe them for it anymore. He went on to say that because I know they work for me if I have an episode I should be sure and request them. I’ll let you come to your own conclusion if that’s the right thing for health providers to do.
Optic neuritis is the weirdest MS symptom I’ve experienced, for others it will be the most devastating. Upon reflection I’m beginning to see not only the physical effects of the disease, but the traumatic ones as well.
Click HERE for sciency stuff that explains the why and how.