Everyone has their own story about how and when they were diagnosed with multiple sclerosis and the subsequent turmoil that ensued. Like the disease itself, the process of diagnosis can vary wildly, taking from days to months to many years. Some people are convinced they have MS, but a doctor has never told them for sure. This is my story. Taking a title from a classic spaghetti western, you could call it “the good, the bad, and the ugly.”
I was diagnosed with MS more than 21 years ago. I had been experiencing numbness in my right pinky and right leg. At first I attributed these symptoms to over-doing it at the gym, but after a few weeks with no improvement, I made an appointment with the family GP in the town near New York City where I grew up. I was 25 and hadn’t had a reason to go to the doctor since I was a teenager. He prescribed an MRI, which I endured a few days later, the first in what would become a long series of being stuck in a tube with the noise of what seemed like loud clanging of pots and pans right next to my head.
I’ll never forget the day the doctor called me at work to tell me the results: "You have either Lyme disease or multiple sclerosis." Just like that, over the phone. Not: “Why don't you come to my office so we can go over the results.” What an insensitive asshole. And somehow I knew: it wasn't “either or.” I had multiple sclerosis. Like the days when John Lennon and Elvis Presley died or when I met the love of my life, this moment was forever locked in my brain.
All I heard the doctor say was “MS.” Immediately, visions of wheelchairs and walk-a-thons and bike-a-thons floated through my brain. And I burst into tears, bawling like a baby, feeling fear and hopelessness I had never experienced before. After the initial shock, I met with a neurologist who confirmed the MS diagnosis. Then I moved on to a lovely MS specialist from Australia who wanted to put me on a brand-new MS drug called Betaseron, which was the first medication created for the sole purpose of treating the disease. Not a cure, mind you, but a way to slow the damn thing down.
However, taking Betaseron meant three weekly injections and since my symptoms had gone away and I felt like my old self again, it was difficult for me to bear the prospect of injecting myself so often. Besides, the MS doctor told me I had a “relapsing-remitting” form of the disease that would remain that way for the foreseeable future. According to her, I was going to live a happy, normal life, and the disease would not interfere with any day-to-day activities. And she thought the way research was headed, there would be a cure in about 10 years, making it harder still to contemplate needles. Looking back on her analysis, I have to laugh: 10 years, 10 years. If only it were true.
After a number of fits and starts, I ultimately made my way to one of the premier MS specialists in New York City. As these things go, he had come highly recommended from a friend of a friend who knew someone who had MS. What can I say about this doctor except that he was one of the best-known researchers in the city with one of the worst bedside manners I’ve come across in my entire life. If I could just get back all the hours I spent waiting in his waiting room, I could take a vacation or do something more useful with my time. As it was, the time I spent under Dr. A’s “care” was some of the most horrific of my life. But I lived to tell the tale, more of which I will share with you next time in “MS in the Big City.”
Have a great week.