I'd only had health insurance for about a year. The years I'd spent without health insurance, made me do my research before I'd spend my meager dollars on an office visit. This was before you could google any subject in the comfort of your home. I would go to a medical library in San Francisco that catered to non-medical people. It was called PlaneTree Health Library. I'd have a medical terminology dictionary under one hand, while I flipped through articles and books describing whatever symptom I was experiencing, with my other hand. Without a primary care doctor, I had to do my own referral. Once I determined what type of doctor I needed to see, I'd start the rounds of phone calls to find one that would see me without insurance. And to get the all important cost of one visit.
Luckily, I had insurance by the time I start having some strange sensation changes in my legs. Since I was use to doing my own research, by the time I had my first meeting with the Dr. D, I had a couple of possible diagnoses. He took my full medical history in his office. Then we moved to an exam room, where he proceeded to do all those neurological "follow my finger", "close your eyes and touch your nose" and the metal hammer taps on nerves close to the surface that would make your leg jump. After he finished, I told him about my research and I wondered if it could be pernicious anemia or multiple sclerosis.
I fulled expected him to dismiss my amateur doctoring. After all my education ended with a Bachelor of Science degree in Photography and Anthropology. Dr. D had all those years of study, ending in a PhD in Medicine, specializing in neurology.
When he said "Well, let's set up some tests for those." my jaw hit the floor. My research told me pernicious anemia was completely controlled with B12 shots or pills. MS was a completely different animal. It's an auto immune disease that is like rolling dice, a complete crap shoot on what, when and where your body will attack the myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves. There wasn't (and still isn't) a cure for it, only a bunch of disease modifying drugs.
As I sat across from him on Feb. 14, 1997, prepared to hear the test results, my brain went blank. He fidgeted with some papers, before he took a breath and said "The test came back positive for MS. I'm sorry." I know he talked about the three drugs approved at that time for MS. I didn't process any of the information. He gave me pamphlets on each drug. Asked me if I had any questions. I had a million questions, but I knew they were not ones he could answer.
The rest of the day was a blur. I had to drive to San Jose to pick Guy up at a convention. I didn't cry much that day. Even driving home, telling Guy what the doctor said, I didn't cry. The fear held the tears in check, until the next morning. I found myself crying in the shower. It was a long shower and a longer cry.
For many years, the only people who knew were my sisters and a few friends. I didn't tell my mom. She was 79 years old and not in very good health. I didn't want to worry her. I didn't tell anyone at my job. The future was a big question mark. Of course, the future always has an unknowable side, but now I felt like each day was a giant question mark. Would I wake up one morning and be unable to hear, or see, or walk? These are all possible MS outcomes, sometimes they are temporary and sometimes they are permanent.
It took a while to breath freely without the specter of MS invading my every thought. I don't know exactly when it happened, but eventually the fear lessened and I found life just going on as it always had. I've been very lucky and have had only one major attack and a few minor ones. I have fatigue and some brain fog, but I've learned to manage it. Overall, I think these last 20 years have played out about the same way they would have had I not been diagnosed with MS. The future is funny that way, and I hope it continues to be this "funny".