Having MS Sucks
I’ve never been athletic. If it involved any sort of hand eye coordination, I sucked at it. But growing up I could hang. I could “participate” in sports and run around with all my friends. In high school, I could keep up during practice (I was the slowest, but still) and then go to dance class for 2 hours no problem. In college, I could run miles every day to and from class (since i was almost always late), walk around Boston at all hours of the night, and keep up with my friends on the weekends.
Then I graduated… and slowly things started getting harder. Walking from the parking garage to the building I worked in was exhausting. I’d be out of breath for the first several minutes of the work day. When I would get hot at work, I couldn’t cool down. My face would get so red it felt like it was on fire. I went from being someone who never napped, to taking 2 hour naps every day after work until dinner.
I thought maybe I was just getting lazier, or I wasn’t in “shape”. I thought it could maybe be my mental health, and I felt fatigued because I was anxious or depressed. But it never made sense since my anxiety and depression was more under control than ever. I went to the doctor in 2018, and she thought maybe I just needed to move more, get into a good exercise routine, and she diagnosed me with heat intolerance because my symptoms matched it. But I was told I could probably deal with it and that once I got into better shape I’d improve and the heat and movement wouldn’t be so hard.
But things didn’t improve. I felt worse with everything I did and felt worse about myself because of it. I couldn’t understand why everything was so hard for me. I gained more weight, started feeling less motivated, and was so unhappy with how things were going for me.
Flash forward to this February. I started to realize my vision was getting blurry in my right eye after I got out of the shower or when I was walking my dog. In March, I completely lost my sight in my right eye during a dance workout. Then COVID hit, and like most I decided to start exercising more to try and stay busy. With the increase in exercise came more issues with my vision.
Now if you know me, you know I am a complainer. As soon as something hurts or feels off, I tell my family or my friends. But this time was different. It was like I had a gut feeling this was more serious.
So I kept it to myself.
I’d mentioned it to friends occasionally, but just thought it was related to the heat intolerance. But when it got bad I finally told my parents and my sister and after some convincing, I went to Mass Eye and Ear. After some tests I was diagnosed with Optic Neuritis, a swelling of my optic nerve, which can cause vision changes.
I was told that having Optic Neuritis gives me a 50% chance of having MS. I felt pretty good about my odds. Then my neurologist suggested an MRI. They found lesions on my brain, and the percentage moved to 75% likely. I was less optimistic. Then they suggested a spinal tap, and my spinal fluid showed differences found in those with MS. So the 75% became 100%, and I was diagnosed with relapsing-remitting Multiple Sclerosis. The most common kind. But the interesting thing about MS, is even though it effects nearly 2.5 million people world wide, they still don’t know much about it. They cant tell me if I will continue to have mild symptoms off and on for the rest of my life, or if I could develop progressive MS and have lasting symptoms or a physical disability.
So the reason I’m writing this is to get all the chaos in my head down in writing. As my About Me says, here I am, just trying to make sense of it all.