My journey with multiple sclerosis (MS) began in August of 2001. I received a phone call that my mom was in the hospital because she had lost vision in one eye. I was unemployed at the time, so I spent a great deal of time with her at the hospital. I did not want my dad to have a hectic schedule, as he is diabetic and must eat and take medication on a very regular basis.
After a couple of days in the hospital on IV steroids and multiple tests, my mom received a diagnosis of multiple sclerosis. She was completely devastated. Although she was a nurse, the only people she had known with MS were either in wheelchairs or nursing homes, dependent on others for care. Needless to say, Dad and I were also shocked, yet relieved that now we had an answer. It wasn't a stroke, which is what my first thought was. Mom regained the sight in her eye and went back to work a few days later.
I went back to my busy life with my husband and two dogs. I was still searching for a job, preparing for the holidays, etc. I checked in with my parents frequently and finding Mom to be OK, just left it at that. In February of 2002, I started working at a university for a petroleum engineering research consortium. I was so glad to join the work force again!
Later that year, I noticed that my right arm felt like it was asleep all of the time. I had those "pins and needles" feelings from just above the elbow all the way to my fingertips. I thought perhaps I had been doing too much data entry and was suffering from carpal tunnel. I went to my primary care doctor and he recommended wearing wrist splints while I slept. Still the numbness and tingling persisted. I went to the neurologist, who did a test that measured my electrical conductivity. This was not pleasant, as it involved pricking needles repeatedly into my arm. The test results were normal. An MRI was ordered, which also showed no abnormalities. I was put on a month-long regimen of Neurontin. After that month of medication, my arm returned to normal and I never thought of it again.
In the meantime, my mother's mood had altered considerably. She was very irritable, had entered into feuds with family and friends and then slipped into a horrible clinical depression. She had been fired from her job and could not explain why. My dad did not know what to do or where to turn. After a long conversation with my husband, we decided that I would take charge of her care. I made an appointment for her with my primary care physician and her neurologist. I went to all of the appointments with her. We helped her file for Social Security Disability. I found a psychiatrist. After reading a great deal about MS and its effect on cognition and depression, I knew Mom had to see a psychiatrist in order to find medication that would not interact with her other meds. Mom was approved for SSDI the first time and slowly returned to herself, after approximately a year on medication.
Although Mom didn't have the outward appearance of MS, she displayed many of the invisible symptoms that the general public are not aware. After her diagnosis, Mom started on Copaxone, a disease-modifying drug, and has not had a relapse since.
So began my journey with the MonSter. I will post more about my experiences with MS in this blog. Come back for more info about me and my family.
Next, Fast Forward to May 2008
4 days ago