If you aren’t familiar with Multiple Sclerosis, it can be hard to understand what it is and how it affects people. The really crazy part about the disease is that it can look completely different from one person to another.
There are so many things that are still unknown about the disease, including why some people have it or how it develops. I am sharing my experiences with MS, but they may be extremely different from others. You can read about my MS attacks/flare ups below!
Table of Contents
My MS Story
My MS Diagnosis
I have what they call Relapsing and Remitting MS, which means that I have periods of time where I experience very little symptoms and then occasionally I have flare ups. Many patients with MS call these “attacks.”
Both of my attacks happened before I was on medication, but there’s always a chance my body could experience a flare up even while getting treated. There is no way to predict a flare up’s onset, so you just have to hope for the best. Here I will describe my two previous flare ups and the way they affected my body.
MS Flare Up #1
It was Christmas of 2016, I was sitting in the movie theater watching “Fences” when things started to get blurry and I felt like I was spinning. I thought that I was going crazy or maybe staring at the screen was affecting my vision. I walked out of the theater and didn’t say anything to anyone about my weird feelings.
In the following days, I would wake up in the middle of the night with crazy spinning feelings. As soon as I moved, the room would spin out of control. I would try to keep myself from vomiting and force myself back to sleep. My dad has had vertigo for a few years, so he offered to give me a few of his pills. They would last for a couple hours but then I would get the spins again. My boyfriend’s mom said there was a virus going around that gave vertigo symptoms, so I figured that must be it.
Then, my eyesight began to fail me and embarrass me. I played tennis at a tennis clinic where most players are very talented. I’m pretty good at tennis, but I’m definitely one of the worst there. I would show up during this time and try to play, but I would completely misjudge where the ball was located. By the time I tried to swing to hit the ball it would already be past me. It felt like I had no peripheral vision whatsoever.
Worrying that I was going blind, I went to the eye doctor. They checked out my eyes and came back to tell me that I had 21/20 vision (almost perfect) and that wouldn’t be very noticeable. The doctor gave me a prescription and sent me on my way. There was no follow up, no referral, no one told me to see a doctor.
I also wanted to get better, because I was going to move to Vietnam for a few months. I convinced myself it was nothing and I willed myself to improve. As the weeks went on, things slowly got better. Dizziness hit me less often, and slowly my vision improved. By the time I left for Vietnam things weren’t perfect, but I went anyways with a suitcase and a new pair of glasses.
Second MS Flare Up
My second attack hit me while I was a first year teacher in DC. I was extremely stressed and overwhelmed, working all hours of the day, and getting very little sleep. One day I was teaching and I noticed that my eye began to twitch. It kept twitching and twitching all day long. I was a little concerned, so I texted some friends and family. They all said the same thing, “it’s probably nothing, you’re just stressed or tired.” So I figured okay no big deal.
I went to a happy hour and even though my eye was still twitching, I had a grand time. Went to sleep that night and woke up the next morning feeling good. I walked into the bathroom to take a shower and looked in the mirror. I almost screamed, my face was completely numb on the left side looking as if half my face just decided to stop working.
I hopped in the shower, thinking “well maybe that will go away.” When I got out, it had obviously not improved. I called my dad crying thinking that I had a stroke or my face was going to look that way forever. Once my dad calmed me down he convinced me to go to Urgent Care. This began the start of the journey to getting diagnosed, which you can read about here.
Although this was an MS attack, it appeared similar to individuals suffering from Bell’s Palsy. My face was stuck like that. It was subtle enough that people didn’t even notice it all the time. It’s kind of hard to explain how it feels, but it’s kind of like your whole face is tight. It took effort to do most normal facial expressions like keeping my eyes open, smiling, and talking. Sometimes, there would be tightness in the back of my neck as well.It was uncomfortable, but it went away within 3 weeks. In fact, it went almost completely away before I was diagnosed.
Since these two attacks, I have not had any major flare ups. I have had days where my hands and feet tingle, I get dizzy, or I have extreme fatigue, but it hasn’t been anything extremely serious. I am staying positive and I am hopeful that my monthly infusions will keep my systems at bay.
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Elly says
So brave, Lita. Thank you for sharing – it will help others feel comfortable.
Maddy says
Thank you for sharing! You’re incredibly resilient!
Alison Regan says
Love and admire you!
Alison Regan says
Love and admire you!