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Eve's Story


Primary Progressive Multiple Sclerosis

My symptoms started in the fall of 2001, in October to be exact.

I am a dietitian, living in Canada and was 49 years old at the time. I am also female and married. One day I went to work and halfway though the day I couldnít raise my right arm higher than midway. "Odd" I thought. I had been seeing a chiropractor for years for pain in my neck and thought this might be the cause. I went back to the chiropractor and told him what happened and after one treatment I was fixed. A few days later I went to work, went to write and found that I couldnít hold the pen very well. Back to the chiropractor. And I was fixed again! In November I started to hear the sound of my right foot slapping on the pavement as I walked to work. I tried to figure out what I was doing to make that happen. It is very hard to figure out how your foot is supposed to work. My husband and I were going out at night and I found it hard to do my hair and put on mascara at night. I love having a bath but found that after a bath I was weaker. So I stopped having baths. My husband suggested my body didnít like warm water. Very prophetic! My right arm continued to bother me so I finally went to my doctor. Actually it was the combination of the right arm and leg. I thought I had had a stroke. Also I had a few times of starting to speak and odd sounds coming out. It just lasted for a second butÖ.

My doctor thought the arm was a result of using a mouse so I went out and bought a scroll mouse for my left hand. I had an x-ray of my right arm which showed early rotator cuff degeneration so I started physical therapy. My right leg was starting to feel funny; it felt like I went down a bit when I walked on it. When I woke in the morning the right leg would stretch and then cramp. In my continuing study of my right foot, I noticed that the toes would not come up. The big toe did but the other toes just lay there. I showed my doctor and he suggested that crossing my legs may have caused damage to the nerve. I didnít cross my legs again for 6 months.

During the winter there were a few times when I had to walk for a distance. After 10 minutes of walking it felt like I was dragging my right leg. I knew something bad was happening then.

When I was at the physiotherapistís one time my right leg started to shake. I now know that as intention tremor. It had happened before and I knew I could stop it by pressing my hand on it. However the physiotherapist saw it and suggested I have a nerve conduction test done by a neurologist. "Something is going on," she said. I work at a hospital so it was easy to see the neurologist there. I saw him on April 2nd, 2002 and he knew something was wrong. I had a MRI on the 10th. I didnít see him again until the 29th of April. When I went in he told me I had Multiple sclerosis, probably primary progressive and set me up for an appointment at the MS clinic downtown.

I went to the MS clinic at St Michaelís hospital on May 12th. I had evoked potentials done. This all before I saw the doctor and I still didnít believe I had MS.

When I finally saw the doctor he looked at my MRI, listened to this history and watched me walk. I didnít have a limp then but if you listened you could hear my right foot brushing the carpet. He told me that I had primary progressive MS and going by the MRI, I had had MS for quite a while. I asked about treatment. I had done my research and wanted Copaxone. He told me there was no treatment and to come back in a year. I was in shock!

I went back to my family doctor, told him how disappointed I was and asked for a referral to a different MS clinic. I got to the MS clinic at Sunnybrooke a year later. In the meantime I worked and drove and walked. I still had no visible limp. Somedays my right leg felt fine. Somedays it was terrible. Sometimes when I had written too many charts my right arm would refuse to write anymore. In the summer of 2002 I felt better. In September I was fine, no hitch in my walk, no limp. My husband said I was walking well. I had no other symptoms, no fatigue, and no cognitive impairment that I could see. Then came October and I felt something in my left leg. It scared me to death but it went away. However my right leg and arm problems came back.

I went to the MS clinic at Sunnybrooke in March of 2002 and saw the neurologist there. He looked at my MRI, listened to this history and did a physical exam. He suggested that since my MS had improved in the summer I was eligible for treatment. I still wanted Copaxone and started it in May. In April my husband and I went to Nassau. I was worried about the heat but it didnít bother me at all. I now had to inject every day. I decided that I would inject when I came home from work. This is now my routine; work, come home, inject, dinner. A month after starting Copaxone I experienced n odd thing. I sat down to play on the computer after the injection, got up an hour later andÖwow. A perfectly good right leg, no limp, no hitch, nothing. The next morning it was back. This happened a few times. I was ecstatic. The summer worked its previous magic. By September my symptoms were almost all gone and every night after injecting Copaxone my right leg was perfect. No one could explain this too me but there is no way I would stop taking this drug. We went to Nassau again in October to see my husbandís parents and for a vacation. Halfway through the trip I felt the ache back in my left leg and my right leg worsened. I went to work the day after we came back. And for the next month I felt my left leg stiffen and my right leg worsen. And that takes us up to now. I arranged to get an articulated foot orthopedic for my right leg and have it now. I have worn it to work a few times and it really does help. I am not using a cane yet. And I am still injecting Copaxone nightly. I will see the neurologist at Sunnybrooke in December and discuss this with him.

© Eve Stevens, 2003