NMOSD When Medication Isn’t Enough to Stop the Fire

NMOSD When Medication Isn’t Enough to Stop the Fire

There I sat, hooked up to an IV for the umpteenth time. As the fluid slowly entered my veins, I felt nothing but resistance. I had developed a deep, sincere hatred for my medication. And it wasn’t just the infusions; my neurologist kept increasing the dosage of my tablets. The mountain of pills on my nightstand grew larger, while my world only seemed to get smaller.

I was grateful for medical help, but the price I paid felt inhumane. Prednisone turned me into a stranger. My face became swollen and unrecognizable, I felt constantly agitated, spent countless nights without sleep, and my emotions were all over the place. Then there was the Azathioprine; those tablets caused constant nausea and a weakness that reached deep into my bones. I was no longer myself, but a shadow of who I wanted to be.

NMOSD When Medication Isn’t Enough to Stop the Fire

The Blow: Medication Wasn’t Enough The worst part wasn’t even the side effects. The real blow came when I discovered that, despite these heavy-duty “horse remedies” and the increased dosages, my body just kept attacking. My immune system was apparently stronger than the medication. My neurologist looked at the new spots on the MRI scan, and I felt the ground give way beneath my feet. Another inflammation. Another loss of function.

In that moment, I felt a deep, suffocating despair. I thought: Is this it? Is this the rest of my life? An endless circle of hospital rooms, increasingly heavy pills, and the constant fear of the next attack. I felt betrayed by my own body. I cried for the future I thought I was losing.

NMOSD: When Medication Isn’t Enough to Stop the Fire

The Turning Point: Stubbornness as My Salvation But somewhere deep inside, an insight began to form. I started to realize that my immune system wasn’t just “upset.” No, my body was constantly “on.” There was no pilot light; it was an open fire that kept burning and spreading through my nervous system. And the medication? It seemed unable to put out the flames.

Perhaps it was my stubbornness, but I refused to accept that this was my only reality. This could not and would not be my life. I started my own research. A quest to understand what was fueling that fire and how I could regain control, even if just a little bit, over my life. I was no longer willing to stand by and watch the fire spread.

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