For some reason people are so eager to learn about my diagnosis with MS. It is so funny to me because I absolutely do not care. The people who ask do surprise me, but never offend me. But at the same time, it was easily the worst day of my life. So why are so many people interested in it? Probably the same reason that I love snapped. It is crazy, and you can’t relate to it, but it is interesting none the less.
Let me take you back to June, 2014. I was living in Savannah GA with my military husband, but was back in Missouri for my best friends bachelorette party, wedding and all events involved. I had started CrossFit about two months prior, and was working out at a local gym while back home for those four weeks.
On the 16th I woke up and felt this weird tingling in my arm. I told my mom and she said it was probably nothing. This is usual, she always thinks I am fine and blows it off. So far in my life she was usually right, so I blew this off. It was just a 3 inch area on my left arm, on the outside of my wrist. The next morning, I woke up and told her again, it felt more intense and was a bigger area, still just my left arm. But pretty much elbow to wrist. She said, maybe I have carpal tunnel. I researched on Dr. google and thought, again, she is probably right. Went to workout and went about my day.
Then on June 18th I woke up, and didn’t pay attention to it. I had slept in late that day since my son was with my grandparents. I could tell the numbness was still there, but it didn’t feel different. I went to get in the shower and start my day. When I was washing my body, I noticed that the numbness had spread. I immediately froze, this did not feel right. It was perfectly normal, but as soon as I touched it, it felt like it was waking up, but ONLY on the left side. This is important. My left arm, left half of my torso, left leg (specifically around my knee), left butt cheek. At this point I quit trying to figure out what was happening and washed everything off me and jumped out. I got ready as fast as I could and went to my moms work. She works at a hospital so it felt like the place to be.
On the way there I called my husband and let him know what was happening. He was pretty sure I got hurt doing CrossFit. He wasn’t a fan of me doing it, but I knew that wasn’t right. If I had an injury it would be different. When I got to the hospital I explained it all to my mom. She called in a few nurse friends to listen. They said things like “if it was injury, it would be both sides” “since your arm is impacted, we know it’s higher up” “does anyone in your family have multiple sclerosis?” I said no and they said it’s probably not that. My mom agreed. We talked a while but everyone agreed I should go to urgent care and see what they say.
I went to my favorite urgent care, alone, but not worried. When I got there, everyone seemed puzzled by it there. They’re used to examining people for colds, UTIs, maybe stitches occasionally. People probably don’t walk in often with a still unknown lifelong disease. The dr examined me, poked me, asked if things felt sharp, checked my strength on each side etc. Left side was weaker. Left side couldn’t determine if he was touching me with a toothpick or q tip. He said he couldn’t tell for sure, but “I want to rule out some of the scary things first”. We talked about MS and that it was unlikely, but we should get an MRI and rule it out. By this point it was mid afternoon, but the radiology clinic in town could still get me in that day.
I arrived at the clinic, still alone, and still in denial about what was happening. I really thought this was an expensive waste of time, but wanted to be sure. I still thought I was going to wake up tomorrow and it would be gone. Just a weird medical thing that would never be explained. I had never had an MRI before, but I quickly realized I didn’t love them. I made the mistake of opening my eyes in there and had to come out for a moment. When I went back in, I kept them closed and tried to make a rhythm of the insanely loud noise. It was like 30ish minutes. Then they brought me out, injected me with contrast and out me back for a few more. Phew. Glad that was done….and I never want to do that again (hahaha! Funny joke after my coming diagnosis)
I spent the rest of the afternoon with my grandparents and my son just enjoying then Missouri summer, and trying to keep my mind off whatever was happening to my body. I got home later that night and was hanging out with my mom when I got a phone call. It was the urgent care Dr that ordered the MRI. Calling from his cell phone-this couldn’t be great. I will NEVER forget his words. How gracefully he told me, how much he seemed to really care.
“The MRI is back. It does look like there are lesions on your brain that support an MS diagnosis. Have you heard much about MS?” I couldn’t really reply. I didn’t really believe it, but also didn’t know what to think. We talked a little about the disease. He confirmed that I didn’t have any tumors on the brain, which was good news! Wasn’t aware that was possible, but I guess I am glad to know. He told me how sorry he was and with that, I knew this was a bigger deal than I expected. He let me know I need to find a neurologist soon and start treatment. I’m not sure exactly how I finally got off the phone, but I did. I called my best friend Ashley who quickly came over. I told my mom who cried immediately. I called my husband who was supposed to be here in 3 days for my best friends Wedding, and we cried together. But I still didn’t know what this all meant. I can handle this numbness, but what else does this mean? Why is everyone so sad?
Word of advice to all future MSers: don’t google MS. It sounds terrible. It can be terrible. But MS is different for everyone. I had the “classic signs” but there is no “classic course” for anyone. I quickly learned that I could wake up tomorrow blind and unable to walk, or perfectly fine. I might not be able to pee normally, balance could go away, I could become wheelchair bound. What the hell! I’m 25 years old! This shouldn’t be happening to me.
I’m not entirely sure what happened the next few days. I was in just a mental fog. I told my girlfriends and a few other people but wasn’t really ready to talk about it. My friend Steven walked down the isle with me at the wedding and had to help be sure I could do it. On the day of the wedding I was VERY numb and my balance felt off. It was SO hot that day, which I later learned made it all worse. I was so thankful to know he wouldn’t let me fall. I felt better when we got to the reception inside and my body cooled. We had a great night. The next day we set off on the long drive from St. Louis to Savannah.
I dove into research of MS, Savannah GA MS doctors, treatment options, etc. I became obsessed with it. What could happen, what I could do to help, deciding when to start treatment vs when to have a baby. Thankful I didn’t have a job to focus on during this time. It helped me embrace my new life and focus on my health 100%. I also felt so alone during this time. I knew nobody with MS. Nobody could relate to me. People didn’t know what to say, so for the most part people said nothing. I also didn’t want to talk about it, so I can’t explain how awful I felt at this time. I cried for about a month. Sometimes about my MS diagnosis, just depression (not diagnosed), sometimes no idea why. I was just alone. Then something snapped. I wasn’t going to let this bring me down. I was going to excel against the odds.
After about 4 weeks I finally went back to CrossFit. My coach there was amazing. She knew about my disease and helped me scale everything to keep me safe. For example, I had a hard time with squats and jumping the same day. My left side just couldn’t jump after it got tired. So I learned to pace myself and do other things instead.
I knew that lots of treatments would make the timing of a second baby hard, so I decided to focus on family and put off treatment until after. My doctor agreed this was fine. My first step in realizing I can control this disease, my treatment, and my life.
My daily numbness went away about 6 weeks after diagnosis. It went away about how it came. Slowly and I almost didn’t notice until it was all gone. I still have days where I feel it. When I am really tired, hot, workout too hard or get sick my left leg (knee) gets pretty tingly and numb. It’s not disease progression, just a reminder that I have MS. I likely always will have this happen.
It has officially been over 4 years since I was diagnosed. I am finally to the point where I can talk about it. I am always happy to share my story. I am most happy to report that I still live a normal life. The biggest change for me is just how much I appreciate life. MS has made me better. I enjoy life more knowing that someday I may not be able to. I take in each day that I can walk and take care of my kids without limitations. I travel as much as I can because someday that may be harder. I laugh more, go to concerts more, snuggle my kids tighter, focus on relationships more, workout more, eat better. I am thankful for the changes I have made and what MS has taught me. I hate the disease and am hopeful for a cure soon, but it could be worse.
I have yet to see what could come. Hopefully I am one of the people with few relapses. But I’ll deal with that when and if it happens. In the mean time, I’ll enjoy life, spread awareness and maybe become a ambassador for the MS society. June 18th, 2014 was the worst day of my life, but since then I have learned and grown so much, and am looking forward to more growth, learning and living a full life.
“I can be changed by what happens to me, but I refused to be reduced by it.”
❤ MS Andrea Jackson
4 thoughts on “My MS diagnosis”
Wow… I am so glad that you now have the courage to share your story.
I love your strength and your determination not to let MS get in the way of living a fulfilled life. I can’t imagine what it would have been like for you, but I just want you to know that I admire you so so much ❤️
Thank you so much for your kind words. I quickly learned that getting mad or angry did not make it better, so I focus on health and happiness. ❤
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Stories like yours make me realize that it was almost a gift not knowing what was wrong with me for the 23 years it took to get a diagnosis. I might have made different choices out of fear and uncertainty, so as frustrating as it was, I’m glad for it now. You sound like you have a great attitude despite getting diagnosed so young – it takes time to get there for sure – and are not letting ms control your life. Thanks for sharing. 😊💕
Thank you so much for reaching out. I couldn’t imagine such a lengthy period of time without answers. I will keep you in my thoughts!