On Sunday, I went back to urgent care for my third steroid infusion. This time, they called me into a small pre-screening room first. There was a nurse who took my vitals and asked a series of routine questions. There was also a doctor. Her face was on an i-Pad-like screen, which was attached to a primitive-looking robot. It felt like I was in a sci-fi movie.
I explained why I was there while the doctor quickly scanned my chart. “You’re here for an MS relapse?” she asked. “Ummm…I haven’t been diagnosed with MS,” I said. I’m sure my face showed my confusion as the wheels in my head started turning. “Oh, this is your first time?” she asked. “This has never happened before,” I said.
That was the first time anyone said “MS.” The eye doctor never said MS. She said it was optic neuritis, that could be caused by many things, but didn’t specify what any of those things could be. Initially, my brain leapt to the worst thing I could think of, which was “brain tumor.” A couple friends assured me that their Google searches concluded it was not a brain tumor. Possibly an auto-immune disease, one friend was convinced that the toxic air from the wild fires was responsible, others suggested it may be stress. But, all assured me it was not a brain tumor.
The urgent care doctor never said MS either. Later, I went back and looked at the after-visit summary that was available online and it did mention MS, but no one said those words to me until this virtual robot-doctor mistakenly assumed I was there for an MS relapse.
So, they think it’s MS? I put on my lawyer hat and started researching as best I could with one eye closed and an old pair of glasses in place of my contacts. I read for five or ten minutes, or however long I could stand it, here and there, day after day. I looked up optic neuritis and its likely causes. MS was the most likely cause, followed by Lyme disease and Lupus. There are also several other auto-immune diseases and infections that can cause optic neuritis, as well as stress, and, in some cases, there is no known cause. I read about MS, its symptoms, how it’s diagnosed, the treatment, and the prognosis. I had heard of MS and had a vague idea of what it was, but I really didn’t know anything about it.
I learned that multiple sclerosis, or MS, is an auto-immune disease where your immune system gets confused and starts attacking your brain, spine, and/or optic nerve. This causes damage and interrupts the signals your brain sends to your body, which can cause loss of vision, nerve pain, difficulty walking, cognitive impairment, and more. I was relieved to read that the treatment has improved significantly over the years and many people live a relatively normal life. Many people told me of friends and family who continued to work, run races, and manage their symptoms well. I also read statistics about the number of people in wheelchairs and heard stories of people who had to quit their jobs due to MS. That part was scary. But, not as scary as a brain tumor.
Reading about MS made me calmer. The uncertainty of not knowing what was going on or what to expect was terrifying. At least now I had information. I had an idea of what might come next. I felt more prepared and more in control.
An MRI is the first, and most significant test, in diagnosing MS. Mine was scheduled for Tuesday, and then I was meeting with the neurologist on Wednesday. I was scared to do the MRI, but hoping for answers.
Unfortunately, MS is not that easy to diagnose.