This story goes back a few years, to 1983 if I’m not mistaken. I was in fifth grade. My mom and I were going to see a production of Annie being performed at Butler High School with the church’s youth group. This was supposed to be a great night. During the play, I couldn’t see. My eyes were fluttering. I don’t recall much more than that.
The next day, the fluttering persisted. When I say fluttering, I mean that my vision was really blurry from my eyeballs fluttering up and down. I told my mom that I was having trouble seeing because of this, and she thought I was playing around at first. When she had me close my eyes, the fluttering continued to happen. She was scared and took me into see my pediatrician, Dr. Ashbaugh. He knew something was seriously wrong and told my parents to get me to Childrens Hospital of Pittsburgh immediately. He actually wanted me to go by ambulance, but my dad wanted both of my parents to be with me, so they drove.
I was in the hospital for a week. If memory serves me correctly, I had several CAT scans, more bloodwork than you can imagine, and an NMR. That NMR is what we call an MRI today. MRIs are common today. Back then, there was one machine in the entire city of Pittsburgh. I also had a spinal tap.
As you can imagine, I wasn’t too aware of what the real problem was. For years, I thought that I had heard the doctors say that I had blood vessels at the base of my brain that hadn’t formed properly. It wasn’t until I was diagnosed in 2003 that I asked my mom what the problem was. She told me that the doctors told her it was a demyelination of the nerves in my brain. At the time, they said it wasn’t Multiple Sclerosis because kids don’t get MS.
It’s amazing what twenty years can do in medicine. Today, diagnosing kids with MS isn’t exactly common, but they do know that kids can get it. I think another reason they didn’t want to tell me it was MS is that my Aunt Velma had just been diagnosed with MS. She and I have always been very close, and I think they didn’t want to scare me.
There are so many details of that first trip to the hospital. I’m trying to pull them all back into memory, and the next time I’m at my parents’ house, I’ll have to poke my mom and dad for more details. I do remember that my neurologist was a man named Ira Bergman, and he had a big mop of dark curly hair. Dr. Bergman’s name would surface in my life twenty years later when Dr. Silverman was in the process of diagnosing me with MS. It shouldn’t surprise me too much to learn that Dr. Silverman would know Dr. Bergman.
Over the next few days, weeks, and months, I hope to continue my story of where I’ve been with MS and how I’m doing today.