When the eye doctor says...."I Think You Have MS."

“I think you have MS.” The eye doctor looked at me with concern.

“What?” But I'm healthy, I thought. By then, the world had already sucked me into a vortex far away from anything and anyone. I vaguely remember Nathan pulling out all the napkins and Kleenex from the doctor’s office garbage can and tugging out all the electrical cords from the outlets. I did nothing. The eye doctor became Nathan's makeshift babysitter. 

Swallowing was hard. My heart pounded in my ears. I shook my head to rattle the dark thoughts bouncing around. “What? Does this mean there could be a tumor up there?” I squeaked out. I thought of my dear friend Kathy who lost her life in short 15 months after being diagnosed with glioblastoma multiforme. Her diagnoses started all because she had a dark curtain in the upper quadrant of both her eyes.

So this is how she felt… My heart sank.

“I’m going to run a series of more tests, but everything you are telling me points to MS. The good thing is you didn’t have a stroke. You do not have a detached retina.”

The room started spinning. I stared at Nathan who was now spilling cheerios everywhere and marching all over them. I blinked. What does this mean? I won’t get to see him grow up? My kids won’t have a mom anymore? I’ll be in a wheelchair? I will start falling apart limb by limb? Karl will be burdened with taking care of me?

A little back story... On Sunday, March 13, I woke with a blur in my left eye. I thought maybe it was one of those floaters or maybe I had extra goop building in my eye. After all, both boys were sick with bad colds. I mentioned to Karl that something was blocking my vision that afternoon and that was it. Monday came and it felt like there was a curtain over my left eye. What was going on? Why did I keep seeing this weird gray overlay? Why did it hurt to move my eye suddenly to the left? I mentioned it to Karl and he snapped at me that I needed to get in the doctor right away but that I’m too stubborn to do anything about it. I didn't even get defensive. He's right. Plus, he too had a dear friend pass away from glioblastoma multiforme, leaving behind two young kids. I could hear the fear in his voice. I knew his mind was going to where mine had.

On Tuesday, my intuition kicked in as I was driving home from work and everything looked so blurry. That voice that pushes me to do things I fear the most reared its head. “YOU HAVE TO GO IN. THIS ISN’T NORMAL.”

I wanted to ignore. I just wanted normal. But it’s hard to ignore when I look out of my eyes all day long. I was constantly reminded something wasn’t right. Something was going on inside my brain.

It had to be stress. Right? Stress does crazy things. Both my grandparents died back to back and I still haven’t fully grieved them. Cuz as a mom when do I ever get to simply BE and THINK? I spent a solid 12 months of not sleeping. The last 3 weeks I was up 3-5 times a night with a teething toddler. We’d just lost an hour of sleep with daylight savings. I had huge projects going on at work, I'm a Beachbody coach to an amazing 2 star Premiere team and my mom just had a double mastectomy and was recovering at home and I couldn’t be there. I felt the heaviness of stress on my chest for months. Was it just that?

The fact my eyeball hurt to move told me otherwise. Eyeballs don’t hurt when you’re stressed out. Do they? I closed my eyes that night and bright blue lights started zipping around my left eye. And then a bright white light followed. It reminded me of the light I saw when I had a dream of my grandpa and he told me his time was coming. Was this a sign? Was my time coming? 

I woke up on Wednesday and felt like I was surrendering. Nathan was sick and I stayed home with him. I knew this meant my projects at work would be pushed behind even more, but by this point, I could barely focus on anything anyway. Plus, any chance I can get with my boys, I'm on it.

My eyesight was getting worse and I asked Karl if my eye doctor was still covered under our new insurance. I would try to get in since I was already taking the day off. Karl took it one step further and got me in with his eye doctor immediately.

I thought maybe I’d do one eye test and they'd know. I sat Nathan on my lap and went through 3 hours of tests that morning. Each one scared me more. I couldn’t see the blinking lights they were showing me in my left eye. My anxiety grew. What was going on? The eye doctor examined and re-examined my eyes. He dilated them. I never once wore contacts in my life, and the glasses I did wear back in the day were more for the “cool” factor and for a stigmatism that was corrected 5 years ago. When I went to my eye doctor in the fall, I was told my vision was even better than 2 years ago. Seriously, what was going on?

He came back in with my test results. “The good news is your actual eyeballs are healthy and perfect. However, you have this thing called Optic Neuritis. Your latest vision test confirms you are unable to see clearly out of your bottom right quadrant of your left eye. Your optic nerve is inflamed and usually optic neuritis is the first sign of MS.”

“What? MS? So it’s not a tumor?” (Why, oh, why did my mind keep going down this road?)

“There are no tumors that I can see in your eye but this is more nerve and brain related and I need to send you to a doctor at the U of M to get a MRI done. I talked to a neurologist already and he agrees with me that you have the classic signs of optic neuritis. They don’t know why it happens. It just does. You didn't do anything wrong. You have all the symptoms and you’re a female between the ages it normally develops.”

I blinked. My brain could not process what was going on. By now Nathan was licking the germ infested toys in the office. All I could do was stare at the floor. The admin assistant was able to get me an appointment but not for another 13 days!!!! I had to wait 13 days to figure out what was going on with my vision? Maybe a tiny part of me was comforted because if this was truly urgent, they would have gotten me in immediately, right?

I got in my car. My head was buzzing. I couldn’t make out words or names and numbers on my phone because I was still dilated and tears flooded my eyes. Nathan was now crying and fussy because we missed lunch and were right in the middle of nap. For one minute I wanted to just have a BREAK from it all. I called Karl and started crying. What was going on with me? Why was this happening? It was Karl’s birthday and I was telling him I might have MS. I didn’t want to tell him but I knew I couldn’t tell my mom. She needed to heal from her surgery. She did not need to worry about me now too. Maybe I'd wake up and everything would be fine?  

For the next several days, I was wound up so tight. My eyesight never changed, which fueled my anxiety. Why was my eye like this? I can say my perspective changed. I looked at everything and everyone differently. I let things go - things like food stuck on the floor and toys scattered all over the kitchen table. I hugged tighter. I snuggled in closer. I took naps. I relaxed on the couch and watched more TV (totally hooked on The Office right now. Thanks to Karl. I needed something funny to focus on) and wrapped myself in my prayer shawl. I begged God to let everything be OK. I prayed and prayed and talked to him and cried in silence. What did this all mean? I tried to stay away from Google but before I knew it according to my symptoms, I had a tumor, leukemia and MS with Lupus.

I tried working out because that has always been my saving grace and my therapy, but my eyesight would get worse every time my body temperature rose and it would create a greater anxiety in me. Was I harming my body? 

By now my mom knew what was going on. I had my preventative care appointment and she was curious as I was how things would turn out. Maybe something would come up there. I told my doctor what was going on and she was just as confused as I was. She ran extra blood work and the results were emailed to me throughout the day via MyChart. Every new test that came through, and I was Googling what organ was tied with the results. Everything was NORMAL. My potassium was a little low and my white blood count came in just under the standard numbers but the doctor didn’t see concern for that. What did a lower count mean, anyway?  I jumped on Google and before I knew it I had a rare form of cancer.

I needed to STOP.

From that point on, somehow I was able to take any negative thought and send it right to God. There was no other option but to do that unless I wanted to burn a hole in my stomach with the amount of worry I felt. I had to work hard at it but that’s what helped me get through the next several days. I figured God already had a plan laid out for me and I had to trust him. I had to trust there was a reason this was going on and I needed to be OK with not having answers.

The 29^th came and Karl and I drove to the U of M together. “Isn’t it amazing what a miracle our bodies really are? We don’t realize how amazing we have it until something goes wrong.” I choked down those words. Karl nodded and gripped the steering wheel tighter. I knew how I was feeling. I could only imagine what was going on in his mind since I’ve always been considered the positive one. I was so thankful he was there. I even mentioned that I felt like a college student again walking around campus next to him. We held hands. When was the last time we held hands?

It felt nice.

I filled out the paperwork and did another series of eye exams. My vision in my left eye was so blurry by now. I could barely make out the tiny letters in the top row of the eye chart. I had to work extra hard at reading them. I panicked.

We met with Dr. Lee and he asked me questions and examined my eyes. He too asked if he could dilate them. He studied them and confirmed that I do in fact have optic neuritis. He held up a bright red folder and the color changed to a burnt orange when I looked out of my left eye. That didn’t happen before when the first eye doctor did that test. My heart raced and palms got sweaty. Was I going downhill fast? 

Dr. Lee laid it out for us. “You have optic neuritis. To be diagnosed with MS you need two of the major symptoms. You have one of them, which is optic neuritis. Now, if your MRI comes back with white matter on it, you are at 75% risk for developing MS and will need to take preventative measures. This would mean you will meet with a neurologist and then decide if you want to get on the medicine that prevents MS. It’s just like someone who knows they have the BRCA1 and 2 genes deciding to get a double mastectomy because the chances of them developing breast cancer are so high. Now, if there is NO white matter, your chance of developing MS is 25% and you get to come back and see me in four weeks. You can also schedule another MRI in 6 months and schedule to get one every year if you want. Otherwise, your vision in your left eye usually will get worse before it gets better and it’ll take around 3 months to be restored. I also think you have something called Uhtoff’s. You have a faulty nerve wire in your eye. That might never be repaired so I want you to be prepared for that. When your body gets hot, you lose some of your vision and then it gets better when you cool back down. You are not harming your body by working out or taking showers. Do you have any questions for me?”

I didn’t. Other than this being a possible tumor. He told me it'd be SO rare for that even happening because all my symptoms point to MS, but he couldn't say never. He used some animal analogy they use in the healthcare field to help calm me and I figured he was probably right. There would be more symptoms if I had a tumor. By now I just wanted to know there was NO white matter on my brain and that I’d be OK. They call this idiopathic optic neuritis - there really isn't a reason why it happens. 

My MRI was scheduled for 2 p.m. I sat in the tube and watched the tech's face reading my scan through the mirror. Did he look shocked? Did he seem concerned? He seemed to be enjoying a pop... You wouldn't enjoy a pop if someone's brain was lighting up with white dots, right? After 15 minutes, he pulled me out of the tube and added dye to my arm. I went back in for another 12 minutes. Taylor Swift sang in my ear and I kept on talking to God. Maybe he wants me to see how truly powerful my mind can be? I had myself believing the worst case scenario. If I can channel all the negative thoughts I have into positive ones, I will be unstoppable. If I can just learn to trust him always and continue to put my faith in him, I will have the peace I need to simply ENJOY this amazing life. But why IS LETTING GO and GIVING TO GOD SO HARD to do though? 

My MRI was over. Now I would wait for the call. I wanted to enjoy the rest of my day but we were out of milk and eggs! So off to Costco I went. It helped keep me distracted.

At 5 p.m. my phone rang. “It’s Dr. Lee. Your MRI is NORMAL. Everything looks great. I will see you in four weeks to see where your eye is at.”

I melted to the floor. I cried with relief. I will BE OKAY. Sure there is still that small chance for things to happen but in my mind, I have my second chance. THANK YOU GOD! It’s time to get busy living!  

Ever have something funky happen to your eye? 

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