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  • Writer's pictureKendall Leary

A Scar Is Born - My Diagnosis Story

Updated: Mar 14

Something's Not Right

It was a Sunday morning that my life changed forever. I woke up after my friend’s wedding with a massive hangover. This hangover seemed different than others as my vision was blurry and doubled when I looked to my peripheral. I went three days continuously writing this off as a bad hangover before deciding to do an online telehealth visit. The doctor asked me questions and gave me a referral to an optometrist, but assured me that this was not an emergency and advised me to continue my week as normal. Things became more urgent that evening while I was sitting at my boyfriend’s birthday dinner with my parents and everyone started to realize that one of my eyes was, as they described, ‘lagging’ or moving separately from my other eye. 

My ER Visit

I went to the Mount Sinai Eye and Ear ER late Wednesday night suspecting retinal detachment (shoutout to WebMD). Mount Sinai ER in NYC is one of the few places in the US that has an eye and ear emergency department with a dedicated on-call ophthalmologist - a lucky happenstance. The ophthalmologist got a wake-up call at 3:00 am to conduct an eye exam. My boyfriend and I were pulled away from the main emergency holding into a small and bright room filled with large machines. As the doctor began his exam, moving his fingers back and forth, up and down in front of me, I could feel my right eye get stuck as he moved toward my peripheral sight. He paused, took out his phone, and re-conducted the exact exam, this time recording the process. He followed this with several other eye tests, then left the room to make a phone call. I nervously waited for him to tell me how he was going to adjust my retina or treat a potential eye infection.

As he walked back in, the mood shift was palpable. “Well, the good news is you have 20/20 vision, which leads me to believe this isn’t an eye issue. I believe there is a neurological issue which means one of four things can be going on. The worst and also the least likely is a mass, I don’t think you have a mass. It could also be an infection, which is bad, but you are showing no signs of an infection, you would be sick or you'd have a fever. This leaves me with two things I think it could be, ischemia and inflammation. Ischemia is a blood clot but I don’t think you have a blood clot, you're relatively young, you're seemingly healthy, you have no family history. Which leaves inflammation.” There was a long pause, I felt the air leave the room. He looked at me sincerely and with concern.

“Have you heard of MS?” 

I saw my boyfriend Zach's demeanor become rigid. They strapped me onto a gurney and loaded me into an ambulance headed to the Upper East Side Mount Sinai for further testing. 

The Six Days at Mount Sinai Hospital 

I ended up spending six days in the hospital while undergoing 3 MRIs, a CT scan, a spinal tap, daily bloodwork, an EKG, and a daily dose of steroids. The good news? Not only was I surrounded by an incredible team of neurologists, but my stay at the hospital happened to overlap with the hospital’s two-week visit from MS specialists, Dr. Krieger and Dr. Miller. This resulted in Dr. Krieger being my doctor moving forward. While this was certainly one of the worst weeks of my life, I found that having an MS specialist, one who cares about his patients along with cutting-edge treatments/trials, is a silver lining. Not only did I end up at one of the top neurology hospitals in the country, but I also had my concerns taken very seriously. It is not missed on me how lucky that is. 

Processing Life Going Forward 

After being discharged from the hospital, the waiting game began. Certain tests need to be sent out to Mayo Clinic to rule out Mogad and NMO (close cousins of MS). The doctors all prepared me for the verdict of MS, but until my first meeting with Dr. Krieger, I did not have an official diagnosis. I spent the week and a half between being discharged and my doctor’s visit doing a massive amount of research. I read “The Wahls Protocol,” I joined an MS weekly Zoom meeting, I visited a friend who was misdiagnosed with MS and then later diagnosed with Mogad… the list goes on. My partner, Zach, spent his days and nights studying the disease, listening to podcasts, and looking into clinical trials. "I should go to school for neurology after this crash course," he'd joke. Needless to say -- research consumed our lives as we compiled questions to ask Dr. Krieger. What I didn’t do? Google MS. I didn't want to imagine a worst-case scenario. I worked very hard to remain calm and hopeful. A quote kept circulating through my mind, “life is 10 percent what happens to you and 90 percent how you react.” If anything, this terrible month has made me extremely grateful for my partner, friends, family, and doctors. In the hospital, my mind kept thinking "I am so lucky." I am confident that with treatment, diet, and exercise, I will live an even healthier life than I did before my diagnosis. 

Because the information on this blog is based on my personal experience, it should not be considered professional medical advice.

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