Read about My MS diagnosis Story:
I woke up the Friday of Labor Day Weekend last year, went to the bathroom, looked in the mirror and gasped. My face was completely crooked and the left side was numb. I didn’t want to believe what I saw, so I tried to shower like normal. As I showered, the shock of seeing my face wore away and I started to cry. I had no idea what was wrong.
I called my dad and he immediately told me to go to the doctor. I then called work and told my boss that my face was crooked. She urged me to go to the doctor as well. That same day I was supposed to head to Idaho to see some of my closest friends and I worried that this sudden facial attack would hamper my trip.
I looked up my symptoms on WebMD (not something I recommend, but something I couldn’t help) and convinced myself that it was a case of Bell’s Palsy. This is a usually temporary condition where half of the face goes numb due to some sort of nerve damage. This self diagnosis was reassuring to me, because Bell’s Palsy tends to go away. I went to urgent care and passed the time by taking silly pictures of my face until I was called in.
The doctor called, “Talisman” and I followed the nurse into the examination room. The doctor noticed my face right away and said that he had to check a few things. He went out of the room and stayed out of there for a while. I started to worry, “Was there something worse wrong with me?” When he came back, he said he thought it was probably Bell’s Palsy, gave me a few prescriptions for steroids, and referred me to a neurologist to ensure everything was alright. He told me that it should go away on its own and that I was fine to travel. I felt relieved and started to be amused by my face.
I flew to Idaho that same day and enjoyed one of the most amazing weekends with friends. I continued to think my face was hilarious, taking daily “Bell’s Palsy Updates” and posting them on my instagram story. I continued to live life normally. Laughing when the kids I taught asked me, “What’s wrong with your face?” and enjoying all my normal activities. I set up the neurologist appointment, but felt secure that I knew what was wrong.
A couple weeks go by and eventually I make it to the neurologist. My dad insists on coming with me so he can make sure that everything goes well and tell the doctor about my family history. The doctor is an older man who has clearly been in his job a while. He calls me in and he asks me about my symptoms. He makes me do a few neurological tests like touching my nose, walking in a straight line, and following his finger with my eyes.
My dad tells him that his mother (my grandmother), also named Lita, died of complications with Multiple Sclerosis. The doctor says no worries, there’s no direct genetic link between grandparents and grandchildren in terms of MS. The doctor says that it looks like Bell’s Palsy, but that my eye is smaller when in most cases the eye gets larger. He says, “Because you came in here today, just to make sure, let’s order an MRI just to make sure everything is okay.” I say sure, fine and don’t think much of it. He makes me get a blood test on my way out to check for Lyme Disease (a common cause of Bell’s Palsy) and I leave.
The following week, I got an MRI on my brain. If you have ever been in an MRI machine before then you know that they are extremely unsettling. You’re put into a cylindrical tube and loud noises are beeping all around you. It would make anyone uncomfortable. When I leave the machine, the technician calls me into his room and shows me the images on the computer. Something that the technician should not do, you should wait for your doctor to analyze the images. He casually says, “There are some white spots on your brain, so they will probably want to conduct more tests.” I am seriously confused and getting worried. Excuse me, what? White dots on my brain? I have no idea what this means.
Over the next week, I tell people about the white dots and I look at WebMD (of course). My parents tell me that I shouldn’t be worried, they’re most likely nothing. My grandpa (a retired doctor) tells me that those white spots don’t mean anything and I’m completely healthy. WebMD tells me it could be anything from nothing serious to Lupus to Multiple Sclerosis. I talk about it at work asking various people their opinions, joking that I’m dying, and laughing about it nervously.
A week or so later I go back in to see the same neurologist, but this time I’m alone. He comes out of the waiting room, looks at me, and immediately asks, “Oh your dad isn’t with you?” Uh oh. That was the first sign that this was not going to be fun. I follow him into his room and he sits me down. He pulls down a box of tissues and sits them on the desk. My heart is pounding, my head is spinning, and all I can think to myself is that this is not good news. He looks at me and says, “This is not what we wanted. This is not what we wanted at all. I was hoping your dad would be here. You have Multiple Sclerosis.”
My head spins out of control, I feel like I can barely breathe, and I am in pure shock. The next thing I hear myself say is “It’s okay.” He turns to me and says, “It’s not okay!” Way to make a person feel better, doctor. I make myself hold in the tears, I don’t want this rude man to see me cry. Honestly everything after that interaction is a blur. He tells me things about medicine and treatment and how it’s way better since my grandma had it. I can barely listen. I just want to get the hell out of that office. They tell me things on the way out, but it’s all so overwhelming.
I walk out of the office, take the elevator down and immediately call my mom. She picks up and I burst into uncontrollable sobs, “I …. Have… MS!” I blubber into the phone. An old lady on a bench in the lobby hears this and says, “Are you okay?” I ignore the kind gesture and continue sobbing to my mother, while walking to my car.
My mother is the most emotional person on the planet, she cries when watching commercials on TV, but my mother does not cry on the phone to me. She consoles me and tells me it will be alright and that we will figure this out together. She holds strong for me and I will always be grateful for her strength in that moment. I needed my mother to assure me that everything was alright as I howled into the phone while sitting in the driver’s seat of my car on that beautiful fall day.
Next, I called my father, while he happens to be on a road trip with his brother and father. Three people who had already seen the awful effects that MS can have on a person, as they watched my grandmother lose her strength and slowly die from this awful disease. I felt almost guilty to tell him, because I knew that experience had taken a real toll on him growing up. My dad is the opposite of my mother though, logical and calm. He goes through the next logical steps and equally assures me that everything will be alright. In these moments, I was at my most vulnerable and my parents were at their most supportive selves. I am so lucky to have them there for me.
As the day went on, I called more and more people to tell them about my diagnosis. I am the type of person who processes things by telling them to as many people as I can and hearing their responses. Each person that I called: my family, my friends, and my boyfriend reiterated their complete support for me and their sorrow at hearing the news.
I have very bittersweet memories of that day and of that weekend. It was one of the worst things to happen to me, but I was surrounded by love. In the weeks and months to follow I learned a lot about the disease and what this would mean for me in my life, but throughout it all, I felt like I had a team rooting for me.