I. Have. MS.
A chronic disease.
May (2016) has been a weird month. Let me start from the beginning.
Mother’s Day weekend began innocently enough. I had plans to see The King and I with my boyfriend’s mother and grandmother. It was going to be a nice girl’s night filled with food and the musical stylings of Rodgers and Hammerstein. I was quite excited about it. When I woke up that morning, however, I was greeted with extreme nausea. I assumed it was food poisoning, and let it run its course. By the time I needed to leave to join my dinner party, I was still feeling weak, but my stomach had completely settled.
I enjoyed the food, the music, the company. It all was going according to plan. Except my vision was weird. It was as though I was looking through a kaleidoscope. I couldn’t quite focus on what was happening on stage. Everything seemed just a little off.
As the good 24-year-old that I am, I brushed off my symptoms, telling myself that it was just a headache from my food poisoning. It was just a migraine from the weather. It was nothing serious. Everything would go back to normal in the morning.
But then morning came, and evening followed, and my vision never really got back to normal. I had extreme light sensitivity. Walking was not easy. I felt disorientated, as though everything in my peripheral vision was wrong. It made it difficult to get things done.
Then the double vision started. First in the mornings. Twenty minutes here. Thirty minutes there. Nothing too major. It cleared up in time for me to go to class, read papers. I was being productive. Until I wasn’t. Until the double vision lasted all day. Until I couldn’t focus on anything in front of me.
At this point, being the good 24-year-old that I am, I consulted the internet. The things I read made me nervous. Brain Tumor. Aneurism. Brain Tumor. Aneurism. I had none of the other conditions that could cause double vision, so those were the three words that stood out. Bold. Flashing. I could picture them on a marquee. Brain Tumor. Aneurism. So naturally, I stopped reading and turned to actual medical professionals.
I see an ophthalmologist regularly thanks to my family history of glaucoma (on both sides) and slightly high pressure in my eyes, so it was easy to make an emergency appointment there. My GP is usually slightly harder to reach, but thankfully that was easy too. Both concluded that my eyes were fine. It must be neurological, they said. Off to the MRI with you, they said.
And so I went. And prayed that my minor claustrophobia didn’t make me have a panic attack. (Side note, MRIs are awesome. Particularly MRIs of the brain. I don’t recommend getting one for no reason ($$$$), but looking at MRI images of the brain is cool. Modern medicine is fascinating.)
My MRI was scheduled for a Tuesday morning. My GP called me first thing Wednesday asking me to come in right away. My mom and boyfriend, Zach, joined as we waited nervously in the consulting room. My usually prompt GP seemed to take an eternity to enter the room.
“Angela,” she said. “I can’t make an official diagnosis. But from what I saw on your MRI, I am able to conclude that you have a demyelinating disease. The most common one is MS.”
I think my mind went blank at about that point. I could see my mom and Zach scribbling furiously on the notepads they had pulled out for exactly this reason. I knew what myelin was. I could understand what demyelinating meant. I just didn’t understand why. But apparently no one does. (Here’s where I get frustrated with modern medicine.) She reassured me that MS is not life threatening. That people lead very healthy, normal lives with MS. That the treatment has gotten 200x better in the last 20 years alone! “Imagine how great it will become in the NEXT 20 years.”
Two days later, with my loving mother in tow, I headed to the neurologist. He agreed with my GP. It was a demyelinating disease. But he could also confirm it was definitely MS. The diagnosis could only be made if the MRI showed lesions on multiple parts my brain (from the demyelination) from various different times. He could not pin point how old the old lesions were. He just knew that everything looked right for the diagnosis, saving me a lumbar puncture for further verification.
My mom, the wonderful woman that she is, consulted with her colleagues about my diagnosis. She works closely with the neurological social workers at the local children’s hospital.
“Tell her it’s not your grandma’s MS! It’s so much better and more treatable now!”
That’s all I’ve heard over the last week.
“It’s not your grandma’s MS!” “It’s going to be fine!” “You’ll be better soon!”
But will I? There are so many questions I am grappling with right now. Will I be ok? How do I comprehend that I have a chronic disease? How do I know I don’t have a form of MS that causes me to be in a wheelchair in years rather than decades? How do I tease symptoms of MS from symptoms of life? What will my future look like?
These are things that I will try to figure out via this blog. Writing will come and go as time permits. It may venture away from MS. For now though, this is the best way I can think of to come to terms with this disease.
I have MS. I am not MS.
(first written on my blog: www.notyourgrandmasms.wordpress.com)