Today I had an appointment with my neurologist to get my MRI results. Now before I go there, I must rewind to just under 2 months ago...
Now because I need an MRI of my cervical spine AND brain (with contrast dye), I was required to attend each MRI on separate days (something to do with Medicare). This was fine, as I had my cervical spine done in the holidays of an evening, then the brain was booked in about a week later during the day.
Brain MRI
Round 1 - It was a Tuesday. It was that Tuesday in early May where we had that storm cell whip up craziness all over Sydney. I had organised a half day at work, and needed to be at the hospital at 9:45am for a 10am MRI. So I allow myself an hour and a quarter to drive there. It took me over 30 minutes to reach halfway at which point my GPS arrival time was starting to dramatically increase. I began to feel anxious (those more than nervous type anxious feelings). So I made the decision to post-pone my appointment, turn around and head home before heading to work. A bit of a waste of a sick day, but probably the safer, less stressful option!
Round 2 - I re-booked for a Monday, but then changed it soon after to a Saturday so I could avoid taking a day off at my new teaching job (which is going great guns btw). So I rock up on the Saturday. I drink a shit ton of water, to help with the vein finding. This plan fails. I got a jab in my HAND, then in my inner elbow with zero success and maximum uncomfortable-ness. We even had heat packs going. Three in fact! And no love. They insisted that I must come during the week (what I wanted to avoid), when they can find a vein via an ultrasound. They called Monday, and there I was again on Tuesday.
Round 3 - First thing's first - I bought myself a salted caramel macaron from Zumbo's at the QVB before bussing it up Oxford St. It was divine. I arrive at St Vincents and am taken into the semi-dark room and into a gown ready for a vein to be found! Again, stabbed twice. With the second having success. I need to have a whinge...there were 3 people in there with me and I had made it clear that I had anxiety but they were all so silent! Why? Talk to me people! This is not fun! As the dude was about to try the second time, I couldn't hold back..."Can someone please talk so I am distracted and I can stop experiencing these disturbing visuals of what's happening in my arm?" They talk and distract me successfully while the cannula enters without going straight through my tiny, crappy veins.
So 'next time' I need contrast dye, I must book on a weekday and have the assistance of an ultrasound!
This is fine. Though, after today's news...I will be very nervous about getting the next cannula in my arm which is likely to be in just over a month because my MRI results show about 10 new lesions, and disease activity including on my cervical spine. I need to change medications (again) which requires a monthly infusion for an hour, then observation for an hour.
Tysabri is my next challenge. My neurologist is confident this medication will stabilise me. However, there is the risk of developing PML (rare brain infection resulting in severe disability and death). I am currently JC Virus Negative and this is a good thing, but I will need to be tested every 6 months as this virus, which most of us have (70%-90%), increases my risk of contracting PML.
What is completely fucked up is that I feel fine, and as you all know, I 'look' fine and I have not had a relapse in over 2 years. But the truth is, as I sit here...my body is attacking itself and it fucking sucks and it's fucking scary and I fucking hate the unpredictability of this stupid thing called MS.
