PeopleWithMS.com

I was diagnosed with multiple sclerosis in September of 1998. Thinking back on all the signs given me, I feel so ignorant. I never heard any information about this disease. I knew that my Father’s boss had it and used a cane to assist him when walking.

My first clue was how clumsy I was. In high school (class of 1980) it was easy to laugh with others at myself. It was especially embarrassing to be helped up by Father Roetzer after falling down the staircase as I had done on more than one occasion. I also fell down basement stairs in 1980 holding a glass that broke on impact, severing three tendons in my right hand. Leg cramps were passed off as growing pains.

During my first pregnancy in 1987 I experienced numbness in my arms and hands, accompanied by leg cramps. The hot summer made me feel ill. It was easy to blame being pregnant for my problems, good excuse.

June of 1988, at 26 years of age, I went to my eye doctor. Any movement I watched made me feel sick. I also was dizzy. Diagnosis was vertical diplopia, I was sent on my way.

As luck would have it, December of 1989 I experienced severe swelling of the glands in my neck (behind my ears). I went to my general practitioner who ran blood work that came back positive for rheumatoid arthritis, but not the cause of the swelling. I was referred to an Eye, Ear, Nose and Throat doctor. He removed and tested tissue from inside my mouth which didn’t show the cause of my problem. In January of 1990, I had a lymph node removed from my neck. The tests came back with the diagnosis of sjogrens Syndrome, and pulmonary sarcoidosis. I was told by another doctor one year later that these auto immune diseases had gone into remission.

May 17, 1993, I went to my eye doctor because my Vision was blurred. I also was having double vision, dizzy spells, and was unable to drive. I was given a field vision test and given a prescription for eyeglasses. On May 27, 1993, I was referred by my eye doctor to a specialist at Milwaukee County Medical Complex. I was given another field vision test, was told I had Nystagmus and should wear glasses. Nystagmus is a common occurrence in Multiple Sclerosis.

While visiting my Internal Medical Physician, (Asthma) I told him about my facial numbness and tingling feet. He gladly accepted my excuse of standing on a tile floor at work and rough housing with my two children. I even asked a nurse who volunteered at my place of work about my symptoms. She was clueless, and she is a professional registered nurse! I continued my journey, picking myself up when I fell, laughing when I was a klutz.

Vacationing with my family in June of 1998 was a blast! Even if it was scorching hot and I felt ill. The feeling would pass and I would be myself again until the next time. The fun continued in August of that year on an extremely hot and sunny day. Our family went to my husband’s company picnic and spent all day in the sun while the kids played games. I wasn’t feeling too well when we got home, but hey, that happens to anyone out in the heat for so long. Two weeks after the picnic, I couldn’t see correctly out of my right eye. My vision was distorted with honeycomb like lines. Off to the eye doctor who said there was inflammation behind my right eye (optic neuritis) and set up an appointment for me to have an MRI done. The MRI led me and my husband to a Neurologist who stated I had Multiple Sclerosis. He wanted to do a spinal tap in his office. My husband said “no way”, he was worried about my safety. The doctor compared it to not wearing seat belts. We didn’t go back to this doctor. Would you believe I found the greatest Neurologist in the Yellow Pages? I’ll call him Dr, R. Dr. R. ordered numerous blood tests, a spinal tap done in the hospital, and an evoked potential test. I was put on Avonex immediately after being diagnosed with relapsing remitting ms.

The year is now 2004, the month is November. I am no longer on Avonex therapy. My MRI that I had in May of this year showed numerous active lesions and some small black holes (dead brain). My ms is worsening and I was told it is now in the secondary progressive stage. I go to the hospital once a month as an out-patient for an infusion of Solumderol (high dose steroid treatment). This treatment along with my current injection of Rebif, 44 mcg three times a week will hopefully slow my progression of multiple sclerosis.

Having a great doctor isn’t the only thing that helps me fight ms. My husband Bryan of 20 years, and our 12 and 16 year old sons are my lifeline. They keep me going. I can’t forget our 4 year old Chocolate Labrador, she is a real cutie!