In a personal message from Victoria to the MOG community, she writes,
“I am 22 years old, and never in my life did I imagine facing something so difficult. When I was first diagnosed, I had no idea what this disease was. I felt lost, confused, and overwhelmed. Through The MOG Project, I found knowledge, support, and most importantly, others who truly understand what I’m going through. This journey can feel incredibly lonely at times, but knowing there’s a community out there makes all the difference. I deeply appreciate everything the MOG community does. I use my social media to spread awareness because MOGAD is something so many people have never heard of. Living on a military post, I’ve struggled to find local medical professionals who are familiar with my condition. I have to travel two hours just to receive the proper treatment. This experience has taught me the importance of self-advocacy. I knew deep down that the symptoms I was experiencing were more than what my doctors initially believed. Trusting my instincts and continuing to seek answers led me to the diagnosis and care I needed.
I want to share my story in the hopes of raising awareness and helping others who may be feeling lost, just as I once did. This has been a life-changing journey for me, and I am happy to share it with you.
Thank you for listening!
Sincerely,
Victoria”
On August 20th, 2024 only a few days after my 22nd birthday I woke up with random eye pain in both eyes. They hurt to move up, down, and side to side. A few days went by. The pain intensified causing headaches and still extremely excruciating to look around. On August 25th I started seeing grainy spots and blotches. I made a same-day appointment with my local optometry clinic and he suggested my eyes were just dry and I had irritation.
On August 26th I started losing my peripheral vision on the left eye so I went to the emergency department and saw the optometrist on shift, she said my eyes were fine and suggested it was possible ocular migraine. On August 27th I went back to the hospital very frustrated because I suffered from ocular migraines as a teen and I knew this was very different.
The doctor I saw that day was very dismissive and suggested that migraines lasted for weeks, she didn't even bother to look at my eyes even after I told her I was losing my vision. From August 26th to the 28th I had lost almost all vision in my left eye and it was spreading to the right.
Finally, one ophthalmologist took my symptoms seriously and on August 29th I was urgently referred to The University of Kansas Health System due to suspected optic neuritis. By the end of the day on the 29th I could barely see out of both eyes. I was considered blind by the emergency department after failing every visual test.
After almost a week in the hospital on high-dose IV steroid treatments, I made great progress.
While in the hospital I did three MRIs, tons of blood work and a Spinal Tap. I was diagnosed with a rare autoimmune disease….Myelin oligodendrocyte glycoprotein antibody disease (MOGAD). This is a demyelinating disease which created lesions in my optic nerves that caused bilateral optic neuritis. I knew what I was experiencing was more severe than an ocular migraine episode and it all progressed so fast.…
I was sent home with prednisone 80mg – and like five other medications. I am allergic to sulfa, so dapsone was one of the medications given to me which is used to prevent infections. Unfortunately, one week after starting dapsone my lips, toes, and fingernails were turning blue/purple. My oxygen levels were at 80 and I had developed methemoglobinemia.
I was in the hospital with rounds of IV methylene blue until my oxygen levels went back to normal.
Now that I am immunocompromised due to the various medications, preventing infections is very important. I now have to do pentamidine 300 mg nebulizing treatments every month. Being immunocompromised has changed me in so many ways, I wear a mask to go out and try to not get sick at all costs to avoid further complications. Being on this treatment has been one of the hardest things my body and mental state could ever endure.
Severe bloating, swollen hands, shaky hands, moon face, anxiety, bruising easily, weight gain, not being able to sleep, heat sensitivity, irritability, and so much more.
I am just happy to make it to the finish line for now! My current testing showed no MOG antibodies present meaning it is not currently attacking my body and my optic nerve scans show healing! My vision has overall returned to normal, besides light sensitivity which I hope someday will get better.
Thank you for listening!
By Victoria
So glad to hear your optic nerves are healing! Keep up the fight! We are stronger together!
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