My Experience with the MonSter
I will never forget the day my neurologist gave me the possible diagnosis...... it was like the world was coming to an end. This was several months after my first symptoms. Let me go to what was, for me, the beginning.
One day I noticed a rather peculiar ‘numb’ patch on my left wrist. I also had a couple of similar patches on my upper arm. I thought it a bit strange but not worrisome. However, on a regular visit to my family physician I did mention it as the sensation had not gone away. He took it seriously enough to send me to a neurologist.
Nothing much happened for a while, and the only way I know of subsequent events is because I was keeping a diary at the time. On 4 December, 1975 I noted that I found a patient dead from suicide. I was working as a Psychiatric nurse at the time and this man was my patient. That was an extremely stressful day. The next day I noted in my diary that I got a cervical collar for pain and numbness in my neck and arm. I wrote that I had had the sensation “for several weeks”. That was my first mention of it in my diary. However the entry for 9 Dec. 1975 was a different matter. “Admitted to hospital. My disc causing problems in my right leg now.” Until now there had been talk of a slipped disc causing my symptoms. The next day I had a myelogram which I said was not bad. However the fact I had 15 mg. of Valium first may have had something to do with that. Results showed no disc, and no tumour. That woke me up. I had no idea he suspected a tumour. I was back to work six days later after one humdinger of a headache caused by the myelogram. I wrote that was a mistake as I was “tired beyond belief”. I flew home to Nova Scotia for Christmas that year and had several notations about fatigue, not sleeping well, and my arm aching.
I was put on Tegretol for the pain and there are no further references to symptoms until 14 July in 1976. That day I pressed my neuro for a diagnosis. He did not want to tell me, but did say it was ‘possible’ MS. I freaked, left his office in tears and went to a friend’s house. The next few weeks I described myself as a ‘mess’ and indeed I was. I was draining my friends and canceling events unless really pressured by friends to go out and do things.
In retrospect my acceptance (which at that time was nil) was made more difficult because we had a patient on our inpatient psychiatric unit who had MS. He was about my age, was in a wheelchair, needed special eating implements and was depressed. I KNEW that would be me in no time at all. I made a couple of mistakes at that time. I read medical textbooks. They are usually out of date by the time they are published, and in 1976 the information on MS was not good. My general practitioner had told me not to read too much, which in light of the material available then was good advice. I would not give that advice today with so much more available. However, it was too late and I read and digested the worst possible scenario. Another thing I did not do was get professional help. I was a Psych nurse and somehow thought it was something I should not do. Another big mistake. It does not matter who we are or what we do. There are times in our lives when we all need help. I did talk with one of the social workers at work once, but I needed more.
That summer I was home to Nova Scotia for vacation and tried to adjust to my diagnosis. The neuro had told me if I went five years as I was I would not end up in a wheelchair. From this viewpoint, twenty-five years later, he was correct, but I also know that is not always the case. I wonder if he was trying to make me feel better. I do know he regretted telling me the possible diagnosis after he saw my reaction.
My diary that summer relates I was taking Valium, taking Dalmane for sleep and SMOKING again, after a twelve year hiatus. I had never been a heavy smoker, and probably did not even inhale but I was such a mess I started again. Thankfully, it did not last long and I have not smoked again to this day. That was my Summer From Hell. Diary entries after that made little reference to my M.S. which was still ‘possible’. I was beginning to adjust although that was a year I would not want to repeat.
One thing that shook me was the reaction of some of the people with whom I worked. Most were great, but my boss really surprised me. She called me into her office one day and told me people were saying I was ‘inappropriate’ during rounds. Rounds in this psychiatric unit consisted of various disciplines sitting around a table discussing patient progress. When I asked her to give examples of this ‘inappropriate talk’ she could not, but said “this happens to people who have MS.” Instead of telling her to take a hike I internalized this ‘information and began to believe I was ‘inappropriate’. I would have expected people working in Psychiatry to be a bit more tolerant or supportive or whatever. As a nurse I expected myself to be strong and in the helping mode all the time. I thought it wrong of me to succumb to my emotions. She did not help me in this regard!
After that one very bad year my life got back to more or less normal. I still had a panic reaction over every new symptom, but I did not have bad relapses and I began to settle down. Two years after my diagnosis I left Ontario to return to Nova Scotia, place of my birth and a new direction in my career. One regret was leaving my wonderful neurologist who was a source of strength. He referred me to one in Halifax who turned out to be The Neurologist From Hell. You know what I mean, the type who did not have an ounce of compassion in him. I finally ditched him, went to another who was very supportive. However, she was too supportive of her patients and burned out. My third neurologist in Halifax was an M.S. specialist, and a prince among doctors.
Over the years my diagnosis went from ‘possible’ to ‘probable’ to definite. This was after I had my first MRI in 1990 or 1991. By this time it was a relief to have a definite diagnosis and I had pretty much come to terms with the disease. I am definitely RRMS, or Relapsing/Remitting MS and I have had exacerbations over the years. For a while I would be given oral steroids for these and that was miserable. I would start at 60 mg. of Prednisone a day and wean it over several weeks. This caused side effects of water retention and mood swings. I would average one exacerbation every two to three years. Most involved numbness and burning pain in my right leg. One very different experience involved my right arm when I had paresthesia (burning pain) that was so severe I could not stand to have the lightest cloth covering my neck, arm and shoulder. The strange thing is that I have never had symptoms in my left arm again, where it all started.
My treatments have varied. In the beginning I was given Tegretol for the pain. I had severe headaches from it and I do not remember it being very helpful. Oral Prednisone gave me bad side effects but did help. I often wonder if the side effects were worth it. The most helpful treatment for me was IV steroids, given over a one hour infusion of 1 Gram, either for 3 or 5 days. Later ones were for 3 days only. I did not have an oral taper with these and found quck relief without much in the way of side effects other than being rather emotional at the time. Sleep was a problem while on the steroid high but a mild sleeping pill made that better. A physician friend suggested taking 100 mg. of Vitamin B6 while on the steroids as it helped to decrease brain swelling from water retention. The latter was responsible for some of the emotional reactions. Due to the tendency of steroids to contribute to loss of bone density I tried to avoid steroids where possible.
Other treatments in recent years have been Amantadine and Evening Primrose Oil to help overcome fatigue. I have been on both for several years. I also gave myself Vitamin B12 injections at monthly intervals for a while but did not notice a decrease in fatigue so stopped.
My symptoms have remained fairly constant over the years. Fatigue has been THE most distressing event of late. I continued to work in nursing full time until the early 1990's. I was working in a busy tertiary care Neonatal Intensive Care Unit, going on transport to bring sick babies to the hospital, working twelve hour shifts, often without a break, doing charge duty, and generally trying to prove to myself and the world that I was able to function as well as any able bodied person. Transport at that time involved being ‘on call’ and coming in on time off to go in the ambulance to get sick babies. The MS was certainly not going to get me. :-)
As I became older the twelve hour shifts became too much. Or was it the MS? My doctor wrote a letter stating I should only work 8 hour shifts. That helped immensely. I had thought I had a ‘second wind’ after the first 8 hours, now I think that may have been wishful thinking. Although nurses are accustomed to working full out, so perhaps it was normal. I had my ‘training’ in the time when nurses did not sit in presence of a patient, leapt to their feet when a doctor entered, let more senior people onto the elevator first, etc. So maybe going full out for 12 hours was ‘normal’. One of my colleagues offered to work my nights if I worked her evenings. I thought at the time she did this because she preferred nights to evenings. It was several years later I learned she had done that because she knew how difficult night duty was becoming for me. You can’t ask for a better friend.
In recent years I had to decrease my number of days a week, then could not work two 8 hour days in a row. I was experiencing problems with balance, not severe, but to the point I would not carry a baby for fear of losing balance. A former CPR instructor, I no longer am certified in CPR as I found getting down on my knees to be physically difficult. I also had asthma which made the breathing part of that difficult. A letter from my physician excused me from the yearly recertifications. I know I could do CPR in time of need, but that was another loss. MS is a series of losses. By 1997 I knew I could not work in NICU much longer. I did not feel safe and that is not a good feeling for a nurse. Nursing had been my life and was a career I loved. I must say here that I believe MS helped to make me a much more caring and empathetic nurse. I truly believe I was a good nurse and know I made a difference in many lives. To no longer be a nurse would be terrible.
At that time I made a shift in my career. I had been for several years interested in caring for babies who had colostomies for reasons of birth defects or medical stress that could cause bowel perforations. There was no enterostomal therapy nurse (ET) in the hospital so I took a correspondence course and became certified as an ET nurse in 1998. I wrote a job proposal for a half time job as an ET in my hospital and it was accepted. This began the most rewarding part of my career. I was able to set my own hours, four hours a day. I came to work at 11a.m and worked until 3 p.m.
In 1998 I also began one of the Big Four of drugs. At that time I was having exacerbations every year to year and a half and taking more Prednisone than I liked. My doctor suggested Betaseron. I was very lucky in that I had no side effects and no injection site reactions. I told the MS clinic nurse at the time that I refused to have side effects as I had enough problems. She laughed and told me not to be too cocky. Whatever the reason I did not have side effects. I know my mind set was not the only reason, however I have learned that attitude plays a large part in how I deal with the disease. I have only had to have IV steroids once since beginning Betaseron, within six months of starting it. That alone told me the interferon was working.
Now for the good part. In 1997 I bought a computer and joined an email support group for those with MS. I noticed one fellow posting witty and intelligent emails. His sense of humour appealed to me. My interest was piqued. I began writing emails to him apart from the group and we seemed to hit it off. I was in Nova Scotia, he in Ontario, about 1,000 miles away. Too bad. I decided I wanted to meet this guy. Following a trip to British Columbia to a conference I flew back via Ottawa. I hired a car and proceeded to visit friends in Ontario. On my way was Perth, Ontario where this certain man just happened to live. We met. I was hooked. His aunt has told me since that she knew right away. <grin>
To make a long story short, I visited Jim several times and on 29 February, 2000 I proposed. Well, I had to, didn’t I? It was Leap Year. He accepted. I still can’t believe I did it. By the way I proposed via the internet, how else, that is how we met. <another grin>
On 5 March, 2001 Jim Carter and I became man and wife. He is the most wonderful man in the world as far as I am concerned. As I write this we have been married five months. Since that time I have developed rheumatoid arthritis and for now am off the Betaseron as the doctors feel there may be a connection. I hope to start back on it later if conditions are right.
I am not ‘glad’ I have MS. But I would not be sitting here now if I did not. We do not know what lies ahead of us. Not one of us knows what tomorrow will bring. I *do* know that I am coping with the arthritis because I have a very supportive husband who is there for me when the pain is bad. With his help I will continue to cope. We will both cope with whatever the MS has to bring us. At least we understand the symptoms. I suppose there are advantages to having the same disease. Perhaps.
So, here I sit, feeling secure in the love of a good man, knowing I have good physicians, knowing I have that terrible disease, MS. I have survived. There were times when the low points were very low, there were times when I was on anti-depressants. But there have been so many good times, good people, good friends, and above all, many laughs. Of all the medicines I have taken, Laughter has been the most effective.
Joan (Kennedy) Carter
6 August, 2001
© Joan Carter, August 2001