Neurology

  I hadn’t seen a neurologist since I was first diagnosed with epilepsy 3 years ago. But immediately after that diagnosis, my doctor said, “I’m moving away and this clinic is closing down now. Good luck!” So, since then, I’ve still been having seizures and struggling to live daily life.

  About a year ago my condition worsened, so I tried my hardest to find a new doctor. But at the time, I had no health insurance. Meaning after months of effort, the only appointment I could manage was a year later. And so I waited, and waited, and suffered, and waited.

  I saw this new neurologist the other day, and it may have been life changing.

  Since I was a kid, I was always told nothing was wrong with me. I would mention collapsing on the floor and losing control of my bladder and the doctor said I just needed to do Kegel exercises. I would say I had uncontrollable staring spells where I was completely lost from the world, and they said I’m just tired from school. I would say I was not able to remember anything between the ages of 13 and 15, and they said I just have bad memory.

  But this is the first doctor who ever believed me! I had made notes the night prior, and I told him everything I have struggled with my whole life. He let me speak for over an hour, taking notes and listening carefully.

  Not only that, but he considered all the possibilities, and even told me it’s possible I don’t have epilepsy. I could have a completely different condition, maybe even along with epilepsy. When I mentioned the collapsing, I added that it’s triggered by strong emotions. Any time I laugh, or get too excited, or too stressed, my entire body loses control of itself.

  He said, epilepsy doesn’t cause that. That is called cataplexy, a symptom of narcolepsy.

  My neurologist has ordered just about every test that could help me. Blood work to identify any autoimmune diseases, a new MRI, and an EMU. I had never heard of an EMU before. But it’ll be 3 days I stay in the hospital where they purposely try to trigger my seizures. I’ll be off my meds, they’ll flash lights in my eyes, keep me awake all night, stress me out. Anything they can to record any events in my brain.

  After that, I’ll undergo a sleep study, and only then will I know if I have this so-called “narcolepsy.” Is it weird that I want to be told I have this condition? The most embarrassing moments of my life have occurred because of my collapsing. It has turned me duller, I am afraid to laugh too hard or enjoy life too much. And I’ve never had a way to explain why.

  I’m so impatient to finally discover what has been controlling my life for so long. I need answers. I need help. I need medicine. I need to be able to move on and live freely.

  May time move faster, and may I have a condition that can be stabilized.