The road to my MS diagnosis started through the eyes
Sudden vision loss in high school was my first neurological symptom
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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.
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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!
Barb A
I first lost my vision while driving with my one year old. Sudden and I was scared something was going to happen to the other. This was in 1986. Crept home. Nothing seen on a vision check by the optometrist. Many nondescript symptoms for years until a wise physician ordered an MRI in 2000. RRMS diagnosis. Lost vision again soon after starting interferon. Never completely normal but ok. Lost total vision in that eye in2015. I have no shadows,light, nothing. Have many other issues but this has been the scariest by far. However, the state DMV has no concerns with me driving. Only requirement is an outside mirror on the effected eye side.
Dianne Pymble-Ward
When I was 21, I started having blurred vision in the morning. I thought it was just sleep in my eyes. Later, I started getting numbness and pins and needles down the left side of my body. I went to several doctors, one told me I was a bored housewife and need to get out more. I was a working woman with three children, but no doctors would believe me. Finally, I found a GP who rang a Neurologist and made an appointment. The Neurologist booked an appointment for an MRI and finally I was diagnosed with RRMS. I’m now 67, retired and have two grandchildren. I use a walking stick, eat well but I’m not as active as I used to be. To stop depression, I tell myself, I’m unlucky to have MS, but fortunate that it’s RRMS, not Primary Progressive, and the medication has greatly improved. I’m hoping at some time, the cause of MS will be found and a cure will be available.
I’m grateful for all of the wonderful people researching our mysterious condition.
Regina Johnson
I have the same story! Except I was 28. Went from the eye doctor to the ER then they did a spinal tap. That’s how I got my diagnosis. Mine is my right eye and my entire right side! Keep fighting and make sure you take some Ice supplements they help. Also Japanese cream tea. Good luck keep fighting.
Lisa M.
We could be twins but decades apart. I am now living over 36 years with MS. Never surrender. Stay MS Strong!
Jim Vacchio
I was about 20 yrs old(58 now) when my left pupil just turned itself upward in my eye and stayed in that position for 2days.You can only see the white of my eye because the pupil was in the stuck in the upward position.I immediately had double vision.Went to the eye Dr.Could not figure it out.Finally a few days later the pupil dropped back into its normal place.Double vision gone.1yr later I woke up with numbness from my face down to my foot only on the right side.Went to the er and they were thinking a stroke and sent me home.The next morning I woke up I had a burning sensation on the left side of my body from head to toe.Went back to the er were they finally found out I had Ms through a lumbar punture.Reading this article reall brought back my first symptom I had with Ms w/o being dx yet.
Dennis
I was in the same situation, lost the sight in my right eye prescribed steroids to bring back, sent to a neurologist and was told it was one of the first signs of M.S.. Fast forward to 2018, had a heartattack which brought the m s to full swing.
From there i've lost my ability to walk, and now i'm losing the ability to use my right arm.
I have taken 2 different treatments. Neither had any effect on the. M. S
Deborah L Gostin
I'm real sorry it was such a frightening experience and that you haven't recovered your site 100% in that one eye. I, too, started my journey with MS with optic neuritis, and a doctor who had treated me for a bladder infection put those two ailments together and suggested I see a neurologist at my earliest convenience. After that visit, it was a possible-probable diagnosis, until I had a couple more optic neuritis episodes, one legally blinding. Then it was no longer a possibility, it was a definite diagnosis. Took a few years of minor to major testing that ended with the most expensive, of course, the MRI. But I was very happy knowing my primary had the right idea from the start. But the insurance, and the neuro department and their protocols, dragged out the correct diagnosis longer than it should have ever taken, causing unnecessary anxiety for me and cost to the medical group incurring the expenses of using their equipment. I guess I understand the cost concerns, but had they done the MRI first, none of the additional time and money spent on all the other testing could have been avoided.
Jennifer
I had a very similar story. I had double vision and was of course taking driver's ed and had my learner's permit. When driving with my dad I had to pull the car over and ask him how many lanes he saw and he only saw two where I saw four. I'm telling you what it's really difficult taking driver's ed with double vision and geometry honors forget about it lol but it took 7 months for them to find that it was MS and it was kind of a relief because they knew and it wasn't just me acting up or something lol
Susan Ohle
I went to the ophthalmologist with a dark spot on my on my right eye. He did not know what caused it but it went away. Ten years later I experienced several symptoms which were MS and the first symptom had been the optical neuritis.
Helena Arseneault
MS in me also presented initially with vision. I was blind in both eyes and diagnosed with optical neuritis. I was told I'd get my vision back in time, but that a second bout of optical neuritis would mean the end of my vision.
That was March, 1986, three months after the birth of my second, and last child, when I was diagnosed with MS. I have not suffered any relapse of optic nerve neuritis since, thank-you goodness.
Now, I have glaucoma controlled with Monoprost eye drops.
I had been told that I was a likely candidate for glaucoma as a result of optical neuritis.
Now, these many years later, I seem to be experiencing MS Spasticity that I have thought is worsening charlie horses in my feet, calves, thighs and sometimes in my torso.
Strange, this disease.
Consider the word disease.....
Dis - Ease.
Phyllis Yeargin
The last MS spchelists I have seen, after my good Dr Birk passed, told me they don't treat a person my age with DMT. I keep up with vitamins and the different medications to help with side effects. They do help somewhat, but not as well as using DMT's. I had been using Tecfidera, when it finally washed out of my system, I started having the same old symptoms, color fading, pins and needles, head aches.
Now I have a lot of neuropathy, don't know if it is a delayed cause of cancer treatment or the MS. So there you have it.
Zika
Optic neuritis was my first symptom too, and I got out of the hospital on my 21st birthday.
Graeme McCrindle
Similar symptoms. I Had blurred vision in both eyes which got worse every day until I was totally blind. I was given ACTH steroid and my eyesight started to return.
I will say that i have never been so scared in my life.