Thinking about what I have gone through to be diagnosed

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Thinking about what I have gone through to be diagnosed

Postby Toosje » Wed Dec 16, 2009 10:37 am

I have been doing a lot of thinking for the past month since the airing of Dr. Zamboni's research on W5. Mostly thinking about how it was that I was diagnosed. I remember I was seven when I had my first neurological test done on me, it was an EEG I remember this because they printed off two extra sheets for me to take back to school and show the kids in my class. That same year they sent me to see my first child phsycologist, who pretty much looked dead in the eyes and called me a liar. He then proceeded to tell my mother that I was starved for attention and had middle child syndrome and technially I wasn't even a middle I was the 4th of 5. When he found out that my mother also had migraine headache I then became a copycat and told her it was all in my "head."

I got better and went into remission for a couple of years and then when I was twleve I had a major relapse on November 1, 1988. I remember that day very well because it was the first year that I was allowed to keep my Hallowe'en candy in my bedroom. I remember that I ate every last chocolate bar I had in my candy bowl that night. That night I was up all night vomitting and everyone associated it with how much chocolate I had consumed that night. Then the migraines set in. I went on for approximately a month with on migraine that just not let up. It was so bad that I was up every night vomitting and was going into the Emergency and the doctors office for regular demeral and gravol shots so that I could get some rest. I shared a room with my sister at that time and I remember waking up the one morning with my comforter pulled up over my head and when I asked my mom about it. Her explaination was really quite simple well your sister knew you didn't get much sleep last night and she didn't want to wake up while she got ready for school.

It was starting to be taken seriously during the next few months by doctors and was sent to see my first pediatrician the first person who actually listened to me. She ordered my first CAT Scan and that was when they noticed the lesions on my brain but they thought they were malignant brain tumours. I was sent to the Hospital for Sick Children to see a neurosurgeon for additional testing or at least that is what they called it they said that they needed me to come back so they could run some more tests on me. My father suggested that they book me to come in to stay over my March break, I was not happy about the timing of these tests but knew it was for the better because I had already missed over a month of school.

I figured I had to be really sick because all of the commercials for that Hospital always made it sound as though only the sickest of the sick get into that hospital. I got in there the beginning of March and they had me one oral steriods and I remember asking my nurse what they were for and she just said well this is what your doctor has prescribed for you, I didn't even know what the medicine was I was taking. I later found out that it was to help shrink the size of what they thought were tumours and to help gain some weight so it was safe for them to operate. I was finally well enough for the surgery on March 15 and they my mom they would break the news to me for her and she insisted that she had to do it. One week to the day.

By this time I already knew far too much medical terminlogy for a 12 year old and I knew the worst outcome was that I wouldn't survive the surgery so of course I was scared to death. My mom knew that my dad always had a way of cheering me up and asked me if I would like to call home. of course being a daddy's girl I said yes I remember my conversation with him was very short. I heard him say hello so I said hi then burst into tears when he asked what was wrong all I said was "daddy they want to cut my head open." He had just as short response to that sentence, "Toosje put your mother on the phone." Apparently I was the one who broke the news to him and he was none too happy about it.

My mother was a nurse so she understood all of the medical terminology, this would prove to be my downfall as a lot of time specialists don't like to be challenged by a parent. After the surgery had been done the surgeon came out and spoke to my mother and told her that it was not a tumour as they had thought. They took a biopsy of the grey matter though, I don't know how acurate the next part is but my mother told me that when they took the biopsy it discinagrated and they had to take another piece. They did however tell her that looked like I had a wet brain, after reading all of the research that Dr. Zamboni has done know that diagnosis sounds like it was correct. I remember after being sent back up to the floor and asking my mom when the chemotherapy was to be started. Her reply to that question was don't you remember them telling you in recovery don't have cancer. I was relieved but also dumbfounded at the same time because I could not remember the conversation she was referring to.

On April 18th of that same year, I remember that date because it was my mom's birthday and she had a really bad migraine. My mom's friend who was also my godmother came into see me and found out how bad my mom's migraine was. They had told me earlier in the day that they were going to put a little needle in the small of my back so I thought nothing of it because I had, had tonnes of needles by this time. My mom knew that they were doing a lumbar puncture or spinal tap and also knew what it entailed. She had told her friend who had, had this test done herself and offered to come into the treatment room with me because my mom was just not up to it. I went into this test nice a relaxed because of how they downplayed the whole test. Now I hold no grudges against this hospital because it was a teaching hospital so of course I knew that there was going to be interns doing tests on me. I was in the treatment room with twelve interns, one liscensed doctor, and a nurse. The interns were all standing behind me, the nurse balled me up as tight as she could to spread the vertebrae and the base of the spine. The first intern was told to insert the first round of freezing and missed so the next one was up and was yelling "bloody murder." I coud hear my mom trying to get into the treatment room which had been locked. By the time they were done I was frozen from the chest down and terrified of ever having this particular test ever being repeated. Over the next 5 years it would be repeated for a total of 19 times. They wouldn't be as bad as that first one and my mother insisted on being in the room for all of them after that first one.

It was the summer of 1989 and I was rowing with my sister at the local rowing club when one day after rowing my sister had bought herself and me a two four from the new Burger King in town. That afternoon I had three consecutive grand mal seizures one after another. My dad was driving a transport truck to subsidize expenses over the summer since teaching he only got paid for the months that he taught. My brother Ian and my brother Sean came into my room to wake me up and go and play touch football when Ian found me not breathing. He yelled at Sean to call 911 because I wasn't breathing Sean being in the rush that he was accidently pulled the phone right out of the wall. Ian was carrying me out to the couch in the living room, while he told Sean to run and have a neighbour call 911. Instead of going to the neighbours he decided to run into the middle of the street and yell, "Some call 911 Toosje's dying." My mom and sister had gone shopping so they missed most of the excitement to come home and find two of every rescue vehicle going in the driveway. Ian rode with me in the ambulance and my mother met us there to keep track of what was going on with me. Tanya (my sister) was left at home to inform my dad of where everyone was, when he came off of the rode from a long day of driving truck. He got to the hospital just in time to be told I was transfered to another local hospital so he got in his truck and headed to that hospital. He got there just in time to be told I had been transfered back to the original hospital I was at. When he got there again he met up with my mom who told him that I had been airlifted to Toronto. I was sent into a medically enduced coma accidently and remained that way for three days.

When I awoke from that coma I found the one doctor I hated the most in the world shining his pen light in eyes looking for signs of life. I then looked to my left and who was sitting there just watching me, my mom the nurses later told me that she never left that chair except to use the washroom.

I would go into remission for the next five years when the exasurbation of all exasurbations happened I woke around five am to use the washroom found out that I just could not get myself out of my bed. I had just gotten back from spending three weeks in Europe where I had, had another grand mal seizure. The people I was with thought that they should let my family know about this but when they called the only person home was Ian so that told him and asked him to let my parents know. My parents were with Tanya at a soccer tournment in Ottawa and he didn't know how to get a hold of them. My mother said that when they finally got home from that weekend that they were met at the top of the front stairs by Ian who's emotions had just overwhelmed him to the point where he was crying because he had known all of this information for an entire weekend and didn't know who to call.

I had just gotten home from Europe two days before I landed in the hospital and undergoing everything from tests on my heart to neurological testing. I had awoken with hemiparalysis on the right side, I had lost my gag reflex, I couldn't swallow, but I had my faculties about me I understood what the doctors and nurses were saying about me. I even heard on doctor call me a retard and then watched then get chased out of my room by my mom. After ten weeks of tests and endless rehab, we finally had the answer we had been looking for, for the past 11 years I had MS.

We used to joke about the one doctor that was convinced that everything that was happening to me was just in my head, we used to say, "He was right it was all in my head."
Toosje Wright<br /><br />The word quit has been erased from my vocabulary<br />
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Postby LoveActually » Wed Dec 16, 2009 2:06 pm

That's been one tough ride Toosje. I'm so sorry to hear about all the crap you went through as a young child and how long it took you to get the right diagnosis. I would be pretty freakin' pissed if I knew I had brain surgery that really wasn't necessary.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Toosje » Wed Dec 16, 2009 2:21 pm

I posed that question to both of my parents afterwards and because of the lack of technology they really had no choice with a family history of brain tumours. But I do think it all made me stronger for having to of gone through it and come out doing what they said I shouldn't be able to do, like ride in 9 consecutive bike tours to raise monies for MS. I made them all eat their words.
Toosje Wright<br /><br />The word quit has been erased from my vocabulary<br />
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Toosje
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Postby LoveActually » Wed Dec 16, 2009 2:42 pm

That's great! Good for you! I'm trying to prepare for my first half marathon. If I can do it, it'll truly be a miracle. LOL!
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Location: Southern California

Postby scorpion » Wed Dec 16, 2009 6:18 pm

Wow. Send some of that whoop ass this way!
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Postby Toosje » Wed Dec 16, 2009 7:18 pm

Well I thank you for your kind words, but it just the way I was brought up no self pitty take life the way it comes and make the best of it.
Toosje Wright<br /><br />The word quit has been erased from my vocabulary<br />
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Toosje
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Posts: 12
Joined: Tue Nov 24, 2009 3:00 pm
Location: St. Catharines


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