I first started to get sick around the middle of February 2003. I was taking a 2 year diploma program in Water Resources Engineering Technology at a local technical school at the time. I was in the second semester. The first symptoms I had were like that of a cold, sore throat, plugged sinuses, run down feeling, etc. I didn’t pay much attention to it and just upped my intake of garlic, ginseng, echinacia, vitamin C and D, etc. By the end of the month I felt almost 100% better. But then a few days later all the symptoms came right back. By the middle of March my joints and muscles were aching all the time, my sinuses were almost completely plugged, I was extremely tired all the time, and started to have quite a headache all the time. I saw 2 local GP’s in the span of a week and both said in was a bad case of sinusitis and gave me prednisone, some antibiotics, and nasal sprays. By the end of the month I was much worse and was going to a local health food store for my supplements and advice. I got a book there called Healthy Immunity by Lorna R. Vanderhaeghe. After reading this book and talking with many other people I came to the conclusion that maybe I had some autoimmune disease.
I wrote my last final exam of the semester on April 2 but still had to participate in a survey camp that ran to the end of the month. My sinuses were so plugged by this time that I couldn’t breathe through them and would lay in bed and pour salt water down my nostrils to try and loosen it up a bit. It was like concrete in my sinuses. I was also using a tiny metal spoon to dig around in my nostrils to get stuff out. On April 4 when I was doing this in the morning it felt as if things were loosening up. I continued to work at them for quite a while. Then I tried blowing my nose very gently. I then had a very severe pain in my right ear as if a nail was driven into my eardrum. My hearing prior to this had gone down just a little over a couple of weeks. After blowing my nose my hearing in my right ear went down quite a bit. I went to the ER and the doctor there said the same thing as the other 2. I told her that she was wrong and that I needed to see a team of specialists to find out what autoimmune disease I had. She just gave me the same stuff as before with the other 2 doctors and some ear drops. I told the school I was no longer able to continue on and the next day I took a bus home to my parents house as I was unable to drive.
I got home and saw my mom’s GP and told him everything and he said the same thing. My parents were quite worried. 2 days later the pain got so bad that I told my dad to admit me to the hospital so I could get demmorahl or morphine. The next day I saw an ENT who was visiting and he did a CT scan of my head and said he has never seen sinuses that plugged and hard before. He also said that it is just a bad case of sinusitis. He said that tubes in my ear drums would allow the fluid in the inner ear to drain out and bring back my hearing. I stayed another 7 days and then was released early one morning as to me and my parents surprise. The ENT wanted to see me in Saskatoon, 3 hours away. We thought it was to have the tubes put in but he just wanted to see me in his office. The highways that day were covered in thick, chunky ice and by this time I could barely walk. I never saw my parents so mad before. The tubes were scheduled to be put in on April 29. My mom was talking to her sister who is a nurse about the whole situation. I was also coughing up bloody mucus starting while I was in the hospital. By April 23 I was so bad my dad decided to take me to the ER in Saskatoon. I was diagnosed in 20 minutes by a doctor who is now my Nephrologist. They first wanted to do a biopsy on my lungs and then on my kidneys, but they decided it was too dangerous and went for the sinuses instead. They had to clean out the sinuses anyway. It proved positive and the next day I started on 125mg of Cyclophosphamide, 60mg of Pred, and Cotrimox. I was released 3 weeks later. I went from a very healthy 155 pounds to a very sickly 95 pounds in less than 2 months.
The ENT I first saw is still my ENT. I have had 3 relapses but have definitely learned a lot about this disease. I am very fortunate to have good doctors that listen to me.
I could have gone into much more detail making this several pages long but most of you have heard much the same story before.
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