What Having Poor Eyesight Taught Me About Being a Proactive Patient, Part Two

In the first part of my story, I told you about how growing up with poor eyesight taught me important lessons about communication between patient and doctor. It also taught me to be confident in my responses to direct questions and to let testing tell its own story.

In 2000, I woke up with extremely blurry vision one Tuesday morning. That day I started with consulting with my personal optometrist who referred me to a retinal specialist who sent me to a neuro-ophthalmologist. This was all in the course of a few hours because something was obviously and seriously wrong with my eyesight.

Ignore the doubtful tone coming from those who don’t know you

The neuro-opthalmologist started my testing with a field of vision test where I had to look into a huge box basically and click a handheld button whenever I saw a flash of light. My vision was fading with each passing hour and the world was becoming dimmer. The technician asked me more than once if I understood that I was supposed to press the button when I saw the light. Heck, I was hardly seeing any lights. I tried not to take the doubt (and tone of voice) personally because this individual didn’t know me and didn’t know that I had been training for this moment for almost 28 years. Following eye doctor office instructions is totally my thing.

The simplest of tests are often quite effective

When the neuro-ophthalmologist examined me personally, he did many of the tests I was already familiar with. Then he totally surprised me. He took an innocent-looking eye drop bottle, held it in front of me, and asked me what color the lid was. Simple. He followed this up by moving the same bottle into my peripheral vision.

Whoa!!!!! Wait. The lid changed color; it went from red to brown. How did he do that, I wondered. Seriously my first thought was that he somehow switched bottles without me seeing his sleight of hand. Nope, this just indicated how much my color vision was changing and that my peripheral vision was going out.

Direct communication is respectful

After this doctor explained that I needed an MRI scan, he explained the three possible conditions they would be looking for: brain tumor, spots/lesions in the brain to suggest multiple sclerosis, or inflammation of the optic nerve (optic neuritis). He let me know that optic neuritis might still mean multiple sclerosis, but it could also be a one-time event.

One thing I’m thankful for is that he respected my need to know what to expect well before test results came back. He purposefully let me know that my vision would get worse before it would get better. Indeed it did; the next day I woke up without any sight out of my right eye. I was faced with a wall of solid opaque grayness.

My worst fears coming true

Although the MRI scans did not show a brain tumor nor did they suggest multiple sclerosis, the MRI did show evidence of inflammation on the optic nerve. This would most likely be temporary and might not happen again I was told. I was also told that with a history of optic neuritis, my risk of developing MS was increased for the next 5 years according to the current research studies.

4 long months

So while I was blind due to optic neuritis, I experienced a bit of what it would be like to not be able to see (out of one eye). It’s hard to know if high dose oral steroids actually helped or not. My vision did not begin to return for almost 4 months. Those were 4 long months. Fortunately, any residual damage from that first attack of optic neuritis has diminished over the years, and for the most part, I am able to see well enough to do the things I want to do.

Again, my input is valuable and necessary

I have a painting in the living room with a blue sky and white clouds with hints of pink. Occasionally, I will cover one eye then the other just to see if the pink disappears. One time the pink faded away, and I knew it was time to call the neurologist. He trusted my personal assessment, asked me to come to the office, and immediately prescribed solumedrol to try to restore my full vision.

Knowing how to respond to changes with my body

When it comes to my eyesight, I’ve learned to act quickly. When it comes to MS in general, sometimes I wait a little before calling the neurologist’s office. But in either case, I am clear in how I respond to questions and present information about what’s going on with my body.

Although it’s a bummer to have poor eyesight (extreme nearsightedness) which is now affected by age (as my arm keeps growing longer so that I can read things more clearly), I’m thankful for the years of practice I’ve had in communicating with physicians.

Learning how best to communicate with your doctors

Doctors can’t do their job well if you don’t do your job as the patient equally well. Learning to communicate and interact with your physicians takes practice, patience, and respect. Each of these is essential in managing our lives with chronic disease.

Be well, my friends,

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