It wasn’t always this easy, and I didn’t always have this attitude. In 1980 I was twenty five, full of life, hopes and fun. Then the bomb fell.
I walked out of a sales presentation and noticed that when I got into my car my left shoe was missing. It was lying in the parking lot twenty feet away. Other strange things were happening to me prior to this incident, but this was the ultimate. I drove straight to the hospital in a little town in Pennsylvania called Altoona, and was told to go to a neurologist in Pittsburgh ASAP. I shook and cried during the whole two-hour trip.
Thirty-one years ago, there were no CAT scans, MRI’s, or visual evoked response (VER) testing. VER testing is a diagnostic tool that measures if nerve impulses are normal. I was asked a series of questions, checked clinically in the office by walking and doing some other things, then admitted into the hospital for a myelogram. A myelogram is a test to look for problems in the spine, by taking X-rays of the spine after dye is injected into the spinal canal through a thin needle. I was told I had an infection in my spinal column and sent home.
I suffered two weeks of excruciating headaches from not being told to lie down for twenty-four hours after the myelogram. The neurologist (Dr. Pathetic) put me on a high dosage of prednisone, never bothering to mention that I could have insomnia as a side effect as well as many other side effects. He said I had an infection in my spinal cord and that it would slowly go away. There was nothing else to do. I slept an average of two hours a night, went back to work, and nearly became an alcoholic.
At that time, few people knew anything about MS. I brought it up to my family after reading an old encyclopedia, but everyone denied it. It was my nerves, they said. I was overworked and was too young to have anything wrong with me. There was no internet, little awareness, and scant literature on the subject. The only reason I knew about MS was because the next-door neighbor where I grew up had it.
I felt alone and terrified. My usual discipline, self-control, and logic were lost; anxiety and stress took over. I had trouble balancing, my left leg was weak and heavy, my left toes were cold; I couldn’t warm them up after running hot water over them. I began writing these and other bizarre happenings down in a journal. The strange symptoms lasted ten months and then all mysteriously went away except for an itching sensation in my left forearm.
But MS stuck in the back of my mind because of something I had read in that old encyclopedia. I had the Babinski sign. The Babinski sign is a test the neurologist will perform in the office. The bottom of the foot is scraped and, in normal people, the big toe will involuntarily turn down. If it turns up, it is an indication that there is a neurological disorder. My toes had turned up. I also had the L'Hermitte's sign— another sign of a neurological dysfunction. This is when you lower you head so that your chin touches the chest, a tingling shock-like sensation zips down the back or body. The neurologist never responded to me when I asked about them. Again, he just said I had an infection in my spinal cord, and not to worry about it. I was too naïve and scared to press further.
Two months after I delivered my son in 1983, it all started again, but differently. I began wetting the bed. My balance and leg coordination were affected. I lost almost all the sight in my left eye. Deep down inside I knew I had MS but my life at the time was too complicated to go for a diagnosis. My husband had lost his job, and by year-end I had lost mine too. Both his parents had passed away. Then I started a new job. My son was now an active one-year old. During that one year, the intense stress from all these major life events was breaking down all my main body functions. It was time to do something.
So in 1984, four years after the initial onset of symptoms, I called a cousin who was a nurse and asked about a recommendation for a new neurologist. He diagnosed me immediately. I had the multiple symptoms in multiple parts of the nervous system. Now, the multiple occurrences, the presence of optic neuritis, and positive findings of a new visual evoked response test made his conclusion that I had MS. I was actually relieved! I finally had answer to my suspicions confirmed. I could go forward and figure out how to deal with this.
Unfortunately, at that time there still was very little awareness of MS. It was a gloom-and-doom picture of a person who eventually ended up twisted in a wheelchair. It’s that “Jerry Lewis thing isn’t it?” everyone asked. Family told me to get a second opinion.
Instead, I went to the local chapter of the National Multiple Sclerosis Society (NMSS) office. It was very small, but welcoming. They gave me some basic brochures about MS, the names of a couple of books that I later ordered through a bookstore, and a name and number of another young woman that had it (after getting her permission to be contacted.) Her name was Cathy.
Cathy was my saving grace. We were about the same age and both of us had a young child the same age. We clicked instantly, sharing stories and feelings. When I told her about my cold toes, she told me how she always had to wear a sock on her left foot. We were phone buddies for years. Relief was spelled “P-e-e-r”.
Beyond my chats with Cathy, there was nobody to teach me the ropes. I was on my own. I read, I experimented, and then I got involved with the local chapter of the National MS Society and met more people with MS. I used my mouth, my brain, and as my great aunt used to say “used my intelligence.”
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