It seems I unfortunately start my story like many others. Just when I hit my stride and was truly thriving for the first time in my adult life, MOGAD swept in without a care and took that away from me. I do feel a deep anger towards this disease for the changes it has forced upon my life, however, for the first time I felt the community I didn’t know had truly existed until they rallied behind me. I have learned that I can be both angry and grateful at the same time. It breaks my heart – the stories I read daily from others living with this illness, and what we go through having such a rare disease.
At times it’s near impossible for some of us to get the help that we need.
It fills my heart with hope connecting with the MOG project community and seeing all the people standing up, advocating for us MOGGERS. I spent most of my young adult life feeling empty inside because I was searching for a community to fit in with and didn’t know where that was until now. Now I am overwhelmed with the joy knowing that I have a community of people who are all looking out for each other. If you have MOGAD and you are reading this, I sit in solidarity as a fellow MOGGER and I will do anything I can to support my beautiful new friends in the MOG community. Thank you for giving me a safe space to be heard, to share and to listen to similar stories and to connect with people going through the same thing as I am. Here is my story and how the last 3 years of symptoms finally led to a diagnosis of MOGAD.
Thank you for listening.
Let’s time travel back to May of 2021. There I am on a nice day in a pair of cute gym shorts working out at my apartment complex. I had just gotten off the peloton bike when the room started spinning violently. I lost my balance and ability to walk and collapsed to the ground. There were several people at the gym who saw me fall, but because I played it off, no one helped. After 5 long minutes, I was finally able to move my legs again after not being able to. I stood up like a drunk person, stumbled my way home where I ended up in bed for 3 months with no break from vertigo, nausea, fatigue, balance issues, seizers, nystagmus, ringing in the ear, paralysis of the right shoulder causing a winged scapula, migraines, light sensitivity, vomiting when hot, confusion, and anger that didn’t make sense at the time until later when I found out it was from inflammation on my brainstem.
From May of 2021 until my diagnosis of MOGAD on December 6th of 2023, I was misdiagnosed with vestibular migraines. There was also talk of Meniere’s disease, Guillain Barre and Parsonage Turner Syndrome, but no official diagnosis other than anxiety that was given at every doctor’s appointment because everyone thought I was making it all up. I know that hits home to so many of us in the MOGAD community – being told we are just crazy and then it turns out it’s really that we have a demyelinating disease of the nervous system. I also had multiple relapses causing burning pain in my paralyzed shoulder and days where I woke up and fell to the ground because my equilibrium was so off. Given all the symptoms I was still being told it was just migraines or that I was just crazy.
I had vertigo all day, every day, for over 2 years and I still get vertigo multiple times a week. Must be the past damage we all know as Uhthoff’s phenomenon, which is triggered by heat - our biggest enemy!
Heat also makes my vision go out which leads me to the documented relapse of optic neuritis and transverse myelitis on December 6th of 2023 that finally brought me to my diagnosis. I had just opened my first brick and mortar business back in August of 2023 and for the first time I knew exactly what I wanted. I was happy, I was healthy, and I was making big plans for my future. I was so proud of Inner Zen Massage. It was in the most beautiful part of downtown Old Overland Park, KS. It was truly a dream. Every morning, I went to work 2 hours early to put my sign out on the sidewalk and of course if you know me – you know I don’t do boring – I had tealight candles burning at 8am, flowers and incense always burning before and during business hours.
I did this to let people know I was there and help them ground through their senses as they walked by to bring peace to their day. My business was a true success and something to be proud of. I was fully booked after only being open for 3 months.
One sad, fine day at work during a massage I lost my vision in my right eye and was in and out of being able to see well, everything was blurry, and I couldn’t make out the large blue LED numbers on the alarm clock nearby so I knew something was wrong. My eyes were throbbing and in so much pain, my legs also started contracting and becoming neurological and I lost my balance while working on a client. My neck and back were throbbing in pain and my right shoulder felt like it was on fire. Somehow, I finished the massage and then I went to the ER. I was found to have transverse myelitis and optic neuritis on both eyes, but most of the inflammation was on the right eye.
Since then, I have been in and out of the hospital multiple times with relapses of both optic neuritis and transverse myelitis triggered from tapering steroids. Each time I battled new and worsening symptoms that had me catheterized, caused a loss of so much strength in my left leg that at one point I had to move it with my arms, and numbness and weakness in both shoulder blades, arms, and legs. I also have moments when I get hot that my vision becomes nothing but stars and red. I also have a history of brainstem inflammation that causes me daily nausea and disequilibrium. I could keep going for quite a while, but I’ll spare you. Now that I finally have my diagnosis, I am getting the treatments that I need and there is so much hope with promising new clinicals trials like the Cosmog trial which I have heard nothing but good things about.
I’m sure you can feel the pain of my story - as I feel the pain reading the all too familiar stories of yours - but with all the support in our community there’s enough love to give us some joyful days and for that I am grateful.
By Nick Reed
