For the next 10 to 15 years, my health was pretty good. After my sophomore year of college, my arthritis acted up (or so we thought). Looking back, I decided that it was actually another autoimmune disease which wouldn't be diagnosed for approximately another 10 years. I'll get to that later. My x-rays showed that the arthritis in my hips was very bad. I had total hip replacement surgery and missed my next year of college. Thank goodness that I had a very proactive surgeon and occupational therapist. It was also the beginning of a time when legislation for the rights of people who have handicaps was enacted. My occupational therapist and I took a field trip to Rutgers college, met with the dean and came up with a list of simple modifications that would enable me to return to college the following autumn semester. I finished my last two years of college using an electric wheelchair and crutches.
During the final semester of my senior year, I began feeling overly tired. I was also showing other symptoms that led me to believe something else was going on. However my doctor couldn't find anything. My mother, who is a RN and sister Ann, in nurses training, convinced my doctor to tests me for hyper thyroidism. The test was positive. This became autoimmune disease No. 3. My doctor was able to get it under control pretty quickly and following a year of medication, it was cured.
I graduated from college but I still wasn't feeling as well as I wanted. I had much weakness and pain in my knees. It was time to enter the workforce and I had to make a choice. One option was continuing to use a wheelchair and purchase a lift equipped van. The other option was to have total knee replacements. I chose the latter. After this surgery, I no longer needed the electric wheelchair or crutches. Friends who I hadn't seen since college, were amazed at how well I was to walk around.
At approximately age 28, I began having unexplained weakness. Back to the doctors I went but several physician could not find anything. This was a very scary time for me. At the worst, I was able to walk approximately six feet, after which I felt like I was going to fall. I wondered if I was going crazy. When I started to walk, I felt fine. However, within a short period of time, I had to stop and rest. I continued to tell my doctors how bad I was feeling. Finally, I was referred to a neurologist. Within a half hour, he diagnosed me with myasthenia gravis. In this autoimmune disease, which is known to be difficult to diagnose, my immune system attacks the nerve endings which signal my muscles to work. At first, this disease was well-controlled with medication. However, after approximately three years, I was feeling poorly again. Ann found a world-renowned neurologist at Johns Hopkins hospital. He had me undergo medical testing for a week after which he recommended a thymectomy. The thymus is the gland which is responsible for setting up ones immune system. When one is born, it's very large. As the immune system develops, it shrinks until by age 50 it can only be seen with a microscope. When they removed mine, it was about the size of a four-year-old child.
For the next few years, I felt well. Then I began having dizzy spells which I ignored. One weekend I had several periods when I knew what I wanted to say but I could not get the words to come out of my mouth. I went to the doctors and we thought my diabetes was acting up. Later that night I passed out. Luckily, I was with my mother and she got me to the hospital. After many tests, I was diagnosed with anti-phospholipid antibody. This is an autoimmune condition in which my blood clots too easily. It commonly occurs with rhuematoid arthritis or lupus.
My Internist calls me his walking antibody. Life has been a challenge but thanks to people like you research is done and progress is made.