Coping with Vision Problems and Multiple Sclerosis
Do you get vision problems from your multiple sclerosis? If you do you're not alone — as many as 80% of MS sufferers experience some trouble with their eyes. For those who are unfamiliar, this is a good recap of what to keep an eye out for (no pun intended).
The most common type of vision disturbance is optic neuritis. Optic neuritis can manifest in many ways, includingblurred vision, decreased visual acuity, decrease in peripheral vision, lack of central vision (a black hole in the center of your field of vision), small black spots scattered around, and even sometimes blindness. Often times optic neuritis will affect only one eye at a time and you will feel pain in the affected eye.
The good thing is that optic neuritis will usually go away completely. It is definitely scary to wake up with vision problems, but there is solace in understanding that blindness is rare and fleeting for most people who have MS. If and when you run into these issues, the treatment to bring you back to homeostasis is the same as when you have any other MS relapse — your doctor will usually prescribe you intravenous steroids for a few days.
Some of the more rare symptoms of optic neuritis are more permanent though. Color vision issues, where colors will have a change in hue, and decreased pupillary response are subtle changes and can be a bit harder for you to detect. I personally struggle with both of these conditions.
Acknowledging the Problem and Asking For Help
The past four or five years driving at night has become a real struggle. Street lights and headlights feel so bright sometimes that I have needed to resort to driving with my sunglasses on.
We lived on an island near Seattle from 2011 to 2013, and it was when I moved there that I really began to notice my issue with bright lights. The shadows of the evergreen trees meant some places near where I lived required headlights even during the day.
This made driving tricky for me and more often than not I would ask for help and have my husband drive for me. Having him drive just took away the stress of having to find a turn in the road or a private lane, hidden beneath the trees.
The color issue that I had was temporary. It was so strange — initially I thought that my glasses were smudged and I kept pulling them off to clean them, but after the third or fourth time, I realized that the problem was not my glasses and was actually in my eye.
I made an appointment to see the ophthalmologist. They are usually pretty quick to see you for something like this and I was in there the same day that my symptom started. They looked at my optic nerve with their fantastic digital analyze and didn’t see anything wrong with my nerve.
My damage was minimal which was a big relief for me! It was when they finally brought me a piece of white graph paper that I was able to actually see the issue. It was amazing! The upper left quadrant of my right field of view was yellow! It looked exactly as though someone had blinded me with the flash of their camera and I was left with that stamp of light on my retina.
It was one of those few times with my MS that I felt completely safe and I fell in love with the science of the moment. I had always heard about the vision problems with MS, but I had no idea what they actually looked like first hand!
Accepting the Changes
That moment was so strange. I never expected to be at ease with a symptom; especially when it came to my eyesight. Our eyes are so necessary. Changes to our vision can have sweeping consequences. But it was just so interesting to me to actually visualize a relapse. It was right there in front of me. There was no avoiding or ignoring it.
I am not saying that I was at all happy about the issue, but I did find solace in the knowledge that I had a healthy optic nerve. If your optic nerve is still thick and healthy then you are on a more solid footing, and that was a delicious thing to know. The disease had not gotten very far at all into its work on my eyes. It felt like I was running a race and I had gotten close enough to see the person in front of me on the track. I was almost close enough to touch this disease. I had snuck up on it.
The stamp in my eye remained for a few months. I felt it was most annoying at night when I was trying to sleep. I would close my eyes to sleep, but that flash would still be there, burning in my vision. I lost many hours of sleep this way.
Eventually the symptom went away. My neurologist didn’t want to prescribe more steroids because I had just finished a round of them a few weeks prior. He had considered this to be part of my last MS flare-up, the tail end of the symptom progression for that time round. I had to rely on patience and trust in my doctor. I had to let go of control, something that does not come easily for me.
I do have lasting affects that have never healed from that relapse. The decreased pupillary response that I mentioned stemmed from this relapse and I also have a headlight that appears over the bridge of my nose when ever I look at an extreme angle to the left or to the right.
These symptoms can be stressful if I let them, and the first year or two I would obsess over them. I would check my eyes often for progression or healing. Neither has happened in over seven years, so I will be grateful for the stability.
It Is Important to Know Your Body
You are a custodian and you need to care for yourself. However, obsessing over it will only cause stress. Vision is just another way that MS tries to stop us up but the truth is, we are a resourceful bunch. We are capable of finding creative ways of getting though and moving beyond coping and into thriving.
You have a high chance of running into vision troubles sometime during your journey with this disease and that is OK. You will be OK. If you wake up with a blindness or something else, just breathe, relax and take your day one step at a time. You will get through this. No one knows what the other side of it will look like, but it will be OK and you will find a way to thrive.
Build yourself a support system. Find ways of creating fail-safe situations for yourself. There is no way to be 100% prepared, but a plan will definitely make a huge difference. Multiple sclerosis is a sneaky disease, but you are smart enough to work around it and laugh in its face.