The road to my MS diagnosis started through the eyes
Sudden vision loss in high school was my first neurological symptom
I was sitting in an introductory biology class during the second semester of my freshman year in high school when things started going downhill.
The teacher was presenting a lesson about the functions of plants, or something in that realm that I don’t remember. I sat in the back row, as I normally did, and took notes. Then suddenly, the vision in my left eye became fuzzy, and I could no longer see the PowerPoint presentation. I couldn’t focus, and I remember thinking that a runaway eyelash or a piece of lint in my eye was causing the fuzziness.
I was wrong. My eye continued to bother me the rest of the day, which began to set off alarms in my mind.
As I’ve said before, I’m a drama queen, and I fully own up to my antics. During my childhood and into adolescence, I wanted to go to the doctor for every minor thing, and I acted as if they were the end of the world. When I told my family that I couldn’t see out of my left eye, they brushed it off, perhaps understandably. But every day, my vision got a little worse.
Time to investigate
When my family realized something was wrong with my vision, they all began to worry. I spent the next couple of weeks in and out of doctor’s offices, getting examined and tested. My mom first took me to an optometrist because we all thought I just needed a pair of glasses. Wrong again.
The optometrist performed a standard exam, which included dilation, digital retinal imaging, a visual field test, and a no-contact tonometer test. None of them revealed anything wrong with my eyes. My vision loss was apparently a more complex issue. Sigh.
The optometrist then referred me to two eye specialists, who ran the same tests but had the equipment to look several levels deeper into my eye. They still couldn’t explain my vision loss, but they did say I was legally blind in my left eye. At this point, I felt scared, sad, and anxious because I wanted answers, as well as my formerly good vision.
One of the specialists referred me to an ophthalmologist, who performed a variety of tests that ultimately revealed I had optic neuritis. To recover my vision, the doctor prescribed me a high dose of steroids and emphasized that I needed to eat plenty. He then told me, less reassuringly, that I could potentially lose my vision somewhere down the line.
I immediately began taking the steroids and ate as much as I could, but it wasn’t enough. A couple of days into the medication, I had an excruciating pain in my stomach that persisted for hours. My family rushed me to the hospital, but the front desk didn’t want to take me back to see a doctor. To speed up the process, my mom showed them the medication I was taking, which made them realize the severity of my situation. It turns out that I needed to eat a lot more than I was.
As the days passed, my vision slowly got better, but never fully. After this episode, I went back to the optometrist to get a pair of glasses because my right eye was straining to balance my left, which never fully recovered. At this point, I felt some relief, but still had a lingering worry because I didn’t want to go through this experience again. Ever.
About three years later, I lost my vision again and went to the same ophthalmologist. He prescribed me the same dosage of steroids and said that I could potentially have multiple sclerosis (MS) — but that had to be confirmed by an MS specialist. Shortly thereafter, I was diagnosed with relapsing-remitting multiple sclerosis.
This period remains one of the scariest and saddest moments in my MS journey because of all the uncertainty and unanswered questions. It was a life-altering chapter that has shaped who I am today.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Merlene Cook
I too lost my sight twice when I had relapse remitting diagnosis. At this time , I had MS for 18 years. 54 years now. Occasionally, I have some sight issues ...optical neuritis. Stabbing pain. I immediately bow out of life and REST. Pampering oneself during this time was essential and crucial for me. It may have taken 2 to 3 weeks for me to regain the eyesight back to normal. I do this process with any symtoms that appear threatening. The biggest problem is convincing others to let me do it my way. I had relapsing remitting for 50 years. Now at the age of 74, I have some permanent numbness and live with more progression. Loss of balance. For me, do what your body needs. Take away as much stress as you can contol ... that means well-meaning loved ones and friends at the time. Become selfish during these times. A true friend will understand.
Merlene Cook
One more point. When I lost my eyesight in one eye, I placed a piece of cardboard to cover the sunglass lense from light entering.. I always wore them for the duration of the flareup. Inside and outdoors.. For fun, I drew an eye on the carboard viewing out. My friends were spooked but I enjoyed their reaction. That is part of taking back the control of a worrisom time. Everyone with MS is different, so you have to find, if you can, a way to cope with the flareups. I befriended my MS. She did not always co-operate with my schedule.
Joe
I received my diagnosis 3 years ago after living with symptoms for over 16 years. I had vision problems in my right eye during that time that went misdiagnosed multiple times and my annual eye exams were “normal”, up until I could no longer read the eye chart. Multiple bouts of mild neuritis over many years slowly degraded my vision and my pre-diagnosis relapse left me legally blind in that eye. After a few MRIs and spinal tap, I was relieved and vindicated to have an explanation for the many years of symptoms and anxiety I experienced as a result of them.
Melissa Tootle
I was 19 when I woke up to my left eye fussy. I has insurance and made an appointment with an eye doctor. In a few short hours I lost all vision in my left eye. I have Optic Neuritis The eye doctor sent me to a Neurologist who sent me for an MRI. So very scared not knowing what was going on. Back to the Neurologist who diagnosed me with RRMS. I only weighed 80 pounds. So no meds for my eye we are letting it come back on it's own. My neurologist said that I should get plenty of rest, eat well and avoid stress. Well it really sucked I could not drive. Had a boyfriend who didn't care about my health! 4 months later my sight came back and I lost my insurance due to a Pre-Existing condition!!! It was 1993. My doctor said there was no medications for MS at that time. Many years I had stress and flare up after flare Up's!! It's been a real shit show. Married for 27 years and 3 kids later I am still fighting MS everyday. I'm on Ocrevus for 6 years and I feel so much better. I had Mono at 14 and never felt better. I'm pretty sure that's where I got MS. 31 years fighting MS
P Joseph
I feel your pain. Been doing this fight for 20 years.
I too was virtually blind in one eye. In time it returned to almost the same vision level.
Best neurologist can say is it's secondary progressive MS and I should be grateful it hasn't affected anything more than my right leg and my balance these past 2 decades.
I don't have any relapses or flare ups. Just gets little worse each passing year.
Depressing at times that I can't do everything I used to do, but without any pain, I've learned to accept the situation.
Never give up and never give in.
Tom A
Yes!
Valerie
Desiree, I'm so sorry to hear about the hardships you've been through. It's hard and very sad. I also went to different ophthalmologists and they didn’t find anything until one of them thought about multiple sclerosis. I believe that for most of us, MS starts with vision loss. But it's not vision loss! We have perfect vision! We've lost contact between our eyes and our brain. It's like an electrical cord has been cut. Eye exercises won't help us, unfortunately. And no one understands why you can't just squint or focus to see anything. If only everything were that simple! Restoring myelin is more difficult than repairing the insulation of an electrical wire.
I wish you good luck on your difficult path!