The REAL LIFE Mystery Diagnosis (A Guest Post)

It's not often that I have a guest post on here-actually I don't remember EVER having one on my blog but I thought this was important. I live up in the mountains where there are deer and elk and beautiful sunsets. With the good come the bad: mice, spiders, long winters and ticks. You all know how much mice FREAK ME OUT but ticks freak me out just as much and the other day I saw one in the house. The next week I emailed my friend Ali and asked her to write about her story on this blog. Ali is the mommy of my old roommate and good friend, Nikki. Ali is 49 years old from British Columbia, Canada. One day she got bit by a bug and her life has never been the same. This is her story...


I am a primary teacher (Kindergarten to grade 3) who had been teaching since 1990. My plans were to become a principal and I was in the process to do so but in August 2002, I made the biggest mistake of my life. We (Garry and I) went camping for about a week east of Lumby, BC and into the Monashee Mountains along Hwy. 6. On the way home from our camping trip, I could feel a bump on the back of my head which I thought was a pimple. I kept squeezing it but nothing would happen. When we arrived home, I left the following day for Calgary to see my mother. The first morning after I arrived, I awoke with my head/neck very swollen. I was unable to turn or move my head. My mother took me to a walk-in clinic where the doctor said, He thought it was a spider bite. I was not given any medication and sent on my way.

I returned home and then Garry and I went to Vegas to get married. We were there for 4 days. August 25 - 29, 2002. It was just a few days after arriving home from Vegas that we went to our local mall. This is where my first symptom began, tremors down my left arm.

Over the next few months, my symptoms continued to multiply: swollen fingers, the outsides of my hands were sore like they had been pounding on a desk and they appeared blue, my words became mixed up, could no longer comprehend what I was reading, difficulty with problem solving, decision making, word retrieval, I could not hold my arms up to write on the blackboard, my knees became footballs, my elbows got swollen and red hot to touch. My feet felt like someone had taken baseball bats to them. My hands at times felt like every bone had been broken. The pain and swelling moved all around my body. I went back and forth to my General Practitioner who not once looked at my hands or any of my complaints. She said there was a “new type of arthritis that tends to move around the body” and kept telling me “just take ibuprofin.”

This continued for weeks, to months, to years. I insisted on seeing a Rheumatologist who said I might have Rheumatoid Arthritis then changed the diagnosis to Psoriatic Arthritis. I was prescribed the 2 drugs that were taken off the market due to side effects (Celebrex and Bextra) and Plaquenile. I was also referred to a Thoracic Specialist because I complained of being totally numb and paralyzed in my sleep. I was unable to turn over without the help of my husband rolling me over. I was diagnosed by the Thoracic Specialist after having a cat scan of my thoracic, that I have an extra rib on each side which is causing the nerve bundle to be pinched (Thoracic Outlet Syndrome) but by February of 2005, I could no longer get out of bed without the assistance of my husband.


Other symptoms I experienced:
-Excruciating headaches
-Extreme sensitivities to smells (Perfumes, colognes, cut grass, flowers, certain foods cooking, cleansers of any sort, smoke. It became so bad that I was unable to go into a public places ie: theatre, restaurants, box stores and parks.)
-dizziness
-Vertigo
-Tinnitus
-Facial twitching from corner of my eye down my cheek
-Hearing disappears in one ear for several seconds then high pitched ring. This continues to happen.
-One side of my head becoming numb like it had been frozen. This lasts for only a few seconds then it is gone and re-appears.
-Cold to the bone.
-Muscle spasms in places you would never dream of. (This has become less frequent with the use of Magnesium but I still get them once in a while).
-Fatigue
-When put on the spot to speak, it was like a steel door came crashing down to stop my thought processes and when I would speak, my words came out scrambled like when you would play that game where the letters were all mixed up and you had to make a word out of them. Only this wasn’t a game to me....it was/is very frightening.
-Poor sleep
-Weakness (In the beginning, I was unable to raise a cup of coffee to my mouth).
-Frustration From being able to be a good tennis player to not being able to enjoy any recreation. At my worst, I would barely make it from the car into the mall where I would then have to sit and rest before going any further. What would take a normal person 10 minutes to walk around our mall, would become at least an hour for me. The walking has improved significantly since I have had treatment even trying on clothes would bring on horrible fatigue and shopping in any sense would exasperate my thoracic area. Housework became a nightmare, as did the ability to cook. Some days my neck was too weak to hold up my head.

My life came to a screeching halt. The Thoracic Specialist took me off work February, March, April 2005, and then finished that school year (May and June 1/2 days). When I went to make an appointment with the Rheumatologist, I was told I would have to go back and see my General Practitioner. I was so frustrated that nobody (doctors) seem to care what I was going through. They were not investigating to see what was causing all my symptoms. I would leave my GP’s office crying because nothing would be done. I remember telling my husband in the car that day, “Don’t ever bring me back to the doctor, even if I am dying.” To this day I won’t go to the hospital. They will have to take me out in a cardboard box.


Part two will be up later this week.