ms-symptoms-optic-neuritis

MS Symptoms: Optic Neuritis

The very first MS symptom I experienced was Optic Neuritis. I woke up one morning in a hotel room unable to see out of my left eye after a stressful experience. I’ve talked about this particular symptom throughout the blog because it played such a significant role in getting my MS diagnosis.

From the time I’ve spent in online MS support groups, I’ve found that the majority of other people with MS received their diagnosis after experiencing the optic neuritis exacerbation. I imagine it is the shock value: waking up and suddenly having a blob in your field of vision? You have to pay attention to what is going on because it is literally in your face.

What is Optic Neuritis?

Simply put: it’s an inflammation of the optic nerve which causes a temporary loss of vision. It can be painful and is primarily linked with Multiple Sclerosis and a few other autoimmune diseases such as Lupus.

Symptoms of optic neuritis include:

  • Pain
  • Loss of vision in one eye
  • Reduced field of vision
  • Loss of color (colors are muted or vision is grayscale)
  • Flashing lights

Optic neuritis is primarily treated through steroids to help reduce the inflammation.

I cannot diagnose anyone online, but I can offer a suggestion to bring to your healthcare professional for discussion:

If you are experiencing loss of vision in one or both eyes and your otomotrist, primary care provider, or opthalmologist are unable to figure out what is going on, consider asking them to test for optic neuritis. I wish someone had told me to consider this option early on as it would have reduced months of confusing and frustrating tests and gotten me the necessary treatment sooner.

Canary in the Coalmine

While the L’Hermitte’s Sign is one of the first indications that I am really stressed out, waking up to an optic neuritis blotch in my field of vision means I have an exacerbation requiring medical intervention. Sometimes I get numbness in my limbs, but I know that I am in trouble when I cannot see or am losing vision in one of my eyes.

Prior to my diagnosis, I was completely unaware as to what was causing my optic neuritis flare-ups. I thought migraine auras, as I had migraines previously but no auras. I would eventually get a migraine and the optic neuritis would fade away, but I can imagine it was a coincidence.

Now, if I get the slightest blotch in my eyes, I immediately contact my neurologist so we can come up with a treatment plan. Sometimes we wait and see if it gets worse and other times I get on some steroids to help reduce the inflammation. Regardless, I know I need to figure out what is stressing me out to cause the initial inflammation episode.

Invisible Symptom = Lying?

Many people with MS have that story.

That story of: “but are you really sick or are you just lying for attention?” My optic neuritis gave me my first and hopefully the only story of ableist treatment by others.

It was prior to my diagnosis and I volunteered in graduate school over the summer. This position required my sight. No amount of accommodations would work: I needed to be able to read to perform my duties as a volunteer.

I tactfully told the people running the program that I could not volunteer and teach at the same time due to some health concerns. I couldn’t stop teaching, so I figured all unpaid work could wait until I was feeling better or at the start of the fall semester.

Because it was summer and I made plans prior to my flare-ups, I went to a concert with a friend and posted about it on social media.

I didn’t realize this caused a stir with those I volunteered for until someone unaffiliated reached out to me. I remember the conversation divulging how people said I lied about my health to get out of volunteering my time.

I was flabbergasted at so many people: at the person bringing this information to me; those in charge; and everyone unaffiliated with situation talking about how I was faking my health issues. My health issues were none of their business and they did not know how I got to the concert. I told the person who started the conversation that concerts do not require sight and I deserved a bit of a break from my health issues if only for a night.

This accusation of shirking my duties made me feel insecure about my health that I felt obligated to overshare with the program once I got my diagnosis. Up until recently, I would explain my issues with MS as a reason for not doing something.

I am at a point where I realize that I do not owe an explanation for myself or my health.

The Emotional Impact

Warning: talk of self harm ahead. If you or someone you know self-harms, please know you are not alone.


Now that I know how to treat this exacerbation, I typically go with the flow and it’s more of an inconvenience than anything. I am bothered when it happens, sure, but that has more to do with feeling frustrated that its happening in the first place.

But when I didn’t know what was going on, this symptom caused the greatest emotional breakdown I had prior to my diagnosis. I needed to see for school and work, I could do neither. I was terrified because the doctors were not providing me with any information or hope of getting better.

Each day, I would wake up hoping I could see out of my left eye again. Each day I woke up unable to see I grew more and more anxious and frustrationed with my body.

I remember taking a shower one day, in the middle of my worst optic neuritis exacerbation (I couldn’t see out of both eyes), completely frustrated over no answers to what was happening to me. I started bashing my head against the side of the shower wall because I was so angry at my body that I wanted to knock the sight back into my eyes.

Fortunately, Ash was there and heard the banging that he immediately jumped into the shower to stop me from causing any serious damage. I was lucky to not concuss myself or cause any lacerations. I just remember him holding me down to stop me from harming myself further and comforting me as I cried for myself.

It was one of my darkest emotional moments.

Even thinking about it puts me back into that mindset of abject hopelessness. That complete lack of control and confusion is indescribable. I hope never to be in that place again.

Once I was in the hospital after my MRI, I felt so much relief in finally getting treatment. An answer was secondary at that point, but I was glad to be on the road to receiving one. If you are interested in reading how I’ve learned to manage this symptom and my cognitive fog from Monday’s post, please sign up for my newsletter. I will be discussing both symptoms in Friday’s newsletter.


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Featured Photo Credit: Amanda Dalbjörn on Unsplash

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Checking In: Coping with Personal Stress

Disclaimer:  I am not a medical professional and none of these statements have been reviewed by one. What is my personal experience and observations may not be the same for another individual.

Read my full medical disclosure policy here.


Today a major milestone in my health journey. Five years ago, I had my very first MS flare-up. At the time, I didn’t know what it was, but I was lucky enough to get answers less than a year later.

Today’s post contains a more in-depth tale of my journey to the MS diagnosis and what brings about my flare-ups. Read the shorter version here.

2012: The First Time

A few days prior to my flare-up, I finished up my final classes, got my grades in, and flew up to Connecticut to help my parents move. As an only child with one year of marriage under my belt, my parents wanted to leave the cold hollows of New England and join Ash and me in Georgia.

This was a particularly hard journey for me because it meant that I would be saying “goodbye” to my childhood home. We moved in when I was 6 and I had many fond memories stored inside; there were over 20 years of memories and I was extremely sad to no longer have the ability to visit it.

December 13th would be my last night sleeping in my old room, and on the 14th I would help my parents finish loading up the moving truck and help them drive down to Georgia over the next three days.

I was not in a good mood. I was grumpy, irritable, but most of all, stressed out.

It was my second year teaching college students composition, struggling with normal Graduate school stressors, and now the final stress of losing what felt like a family member was too much for me.

But there would be more.

On the 14th, a little more than an hour away from my location, Newtown happened. I had to keep it together to help finish the moving process, but inside I was really struggling with all of my feelings. I had a tight burning in my chest as I swept and mopped the living room floor. I had to keep everything together.

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The product of my labor: a clean living room floor. Possibly the only time I did this chore in this house.

We loaded up the truck around 6pm, my mom and I hopped in her car, and we headed south while my dad followed in the moving truck. We were headed towards Pennsylvania where we planned to stay for the night at a motel.

I slept on a pullout bed which was extremely uncomfortable. I was exhausted, so I didn’t think much about the day’s events, and I fell asleep.

When I woke up, there was an oval spot in my right eye’s field of vision. I had a slight headache and I was feeling unwell. At first I thought my glasses were dirty, but no matter how often I cleaned them, that spot wouldn’t go away. I rubbed my eyes thinking there might be some junk with no luck. I didn’t understand what was happening as we went to get breakfast at the local McDonald’s.

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Found on the restroom door of that McDonald’s. Even with the spot in my eye I could see how dated this was…

I had had migraines before, but I never experienced an aura prior to the migraine. Normally I would not have a migraine and then boom, migraine without warning. My migraines were increasing in frequency. I would have one once a year and I was starting to get them every 6 months or so, so when I looked up my eye symptoms, it seemed like a natural progression.

Figuring it was an aura, I was relegated to being the navigator when I didn’t have a black skull cap I bought at a gas station over my eyes to help manage what I thought were the beginning moments of a migraine. When we stopped in Virginia for the night we all thought the spot would go away with a good night’s sleep.

It did not. In fact, it got worse. It didn’t cover my whole field of vision, but it was more prominent. The day before, I could kind of see through this smudge. Now it was a translucent spot that partially blocked objects.

I was definitely scared. I didn’t know what was happening and how to fix it.

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