The Shock of Being Diagnosed with MS (Part 1)


January 18, 2021

At my college graduation, almost a year before receiving my MS diagnosis
May 2011: The last summer of living free from MS

Shock: noun, a sudden upsetting or surprising event or experience. I’m going to get a little personal with y’all in this blog post series as I share the shock of being diagnosed with MS.

Before I jump in, let me tell y’all what Multiple Sclerosis is.

Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

The National MS Society

Let’s get into my story.

I graduated from college at 21 after a year of living my life to the fullest. Age 21 was the most carefree and irresponsible year of my life and I loved every single minute of it, until everything changed in July 2012.

I noticed my vision in my right eye was off–I practically couldn’t see out of it. My initial thought was that I tore something and quickly made an appointment with an eye doctor in Pennsylvania since I’d be there to support my parents when my mom was undergoing a minor surgery. I explained to the eye doctor what it looked like to see out of my right eye and he told me he had to run several tests. No problem! This should be painless and straightforward since I already know what’s going on, at least I convinced myself that it would be so simple. Forget the fact that I didn’t have an MD behind my name, lol. The results came back the next day in a way that I hadn’t anticipated.

I went back in expecting to hear the doctor tell me I’d need surgery until he uttered the words I never imagined hearing at 21, “You’re going to need an MRI.” Umm, I’m sorry, what?! An MRI?! Isn’t that the brain thing that makes you lay in a round contraption for God knows how long?? I stuttered, felt my heart beat at a rate slightly faster than normal and was anxious to leave the doctor’s office so I could do the one thing we are ALL guilty of doing when something doesn’t feel right: Google.

Exactly one year before receiving my MS diagnosis
My younger brother and I exactly one year before my MS diagnosis

In my mind, the doctor needed to examine my brain because I had a tumor that was pressing on my eye and impairing my vision (talk about extreme!). I was all over WebMD trying to figure out the probability of my hypothesis being true. Here’s my eye problem, and here are all the reasons why it only makes sense for this to be brain cancer. 

I cried to my parents when I got back to their house and I’ll never forget my mom, who was recovering from her surgery, trying to muster up the energy to sweetly tell me to calm tf down. I listened, but that didn’t stop me from Googling like a maniac until I figured out what was going on and, of course, diagnosing myself. Who needs doctors?! Lol. I searched every keyword about the eyes that I could think of. I learned so much about the eyes that I may have passed the Boards to become an optometrist, lol. Anyways, after looking all over the internet for what seemed like hours, I finally landed on optic neuritis. That’s it! That’s what I’m experiencing! I’m a genius! I felt a little relief and was ready to return back to DC where I lived on my own to take down whoever optic neuritis was and whatever brought it here.

I told the eye doctor in Pennsylvania that I’d find a neurologist in DC since I had to get back for work and after asking a few coworkers, I was referred to one at a local hospital. I made an appointment and traveled by land and sea to get to him (at least that’s how it felt, lol). Once again, I explained what I experienced, including the vertigo I had in 2011, and patiently waited for him to tell me what was going on. Did he? Nope. Instead, he told me I needed to see an ophthalmologist and a rheumatologist. You’ve gotta be kidding me. More doctors?! More tests?! Google already told me what I have, just give me meds and send me on my way. I hesitantly obliged and made appointments, got more tests done–including the MRI that I dreaded–then, before I knew it, I was back in the neurologist’s office. Keep in mind, I went to these appointments all over DC on my own, without a car and after each one, I returned to my apartment where I lived…alone. When I tell y’all that was the loneliest, hardest experience of my life, it was TOUGH. But I was tougher. I had to be.

The summer before receiving my MS diagnosis
My best friend and I, recent college graduates, who were excited for the future

I was back with the neurologist who I found myself growing frustrated with because he sent me on a scavenger hunt for my diagnosis when Dr. Me had already figured it out. Finally, he sat me down and explained that it appears I’m developing Multiple Sclerosis. Multiple Sclerosis? Who gave me that?? He continued to explain what it was and shared what my next steps were. “I can’t officially diagnosis you right now but if you have another flare up, you officially have it.” I became a stone. Numb, shocked, stoic. What did I do next? If you guessed “Google MS,” you’d be right. And the more I read, the more I sobbed. How in the world is this happening to me?! I’m 21! What have I done to deserve this?? The shock of being diagnosed with MS hit me hard. This was a condition I couldn’t work myself out of, and it hurt.

During my second visit to the neurologist, he shared the treatment options with me if I found myself experiencing another flare up. One of the options included injecting a needle in my thigh once per week. “You’ll have to alternate legs each week because you may bruise.” Huh?? I’m too cute for this! “It will also have side effects that will make you feel like you have the flu 8 hours after you’ve injected it.” The flu??? I’ve never even had that, I don’t know what that feels like and I don’t want to know! I’m sure he could sense my anxiety and the shock of being diagnosed with MS all over my face. He probably also realized I didn’t completely believe it so he offered to do a spinal tap. I wasn’t interested because, in my mind, he was wrong. There was no way I had or was ever going to have MS. Later, I Googled what a spinal tap was. Y’all. Had I agreed to do it and saw that needle come out, I may have fought the doctor. I may have been sued, but I would have fought him.

I ended up finding a new neurologist who recommended that I start taking Avonex, the medication that I had to inject in my leg. I listened and I also got sick, like the previous doctor warned me that I would. I tried the injection at night, thinking I could sleep through the symptoms. But the “flu” woke me up every single time. Keep in mind, I lived alone so I was wide awake once a week, sick with chills, dizziness and body aches. It was awful. Finally, I decided to do it in the morning then right after lunch, I’d lay on the couch in this small, windowless room at work with my coat as a blanket, a pillow and water, trembling my way through the symptoms until they surpassed. The shock of being diagnosed with MS was hard enough. Add on taking flu symptom-inducing medication to the equation. I have to do this for the rest of my life? What kind of sick joke is this?

The dismay and hurt that I felt is something I’ll never forget. My eye ended up healing about 90% and I continued on with life that summer not letting this so-called MS, painful injection and a clueless neurologist ruin it for me. Then, 2013 came around and optic neuritis miraculously appeared again…in my left eye…in July. Maybe that doctor knew what he was talking about after all.

The shock of being diagnosed with MSs was the first hurdle. Next, came getting past denial. Click below to read part two.

Part 2: Denial Prevails