The week that was ...

As the first month of the new year comes to an end I finished it off with a few fancy eye tests, a catch up with my neurologist and 10 vials of blood less.

On Tuesday morning I made my way up to Brisbane fresh faced, bright eyed and bushy tailed for a morning full of eye tests. Over the last few years since being diagnosed I have had countless MRI’s and ophthalmologist visits to track how my eyes are going but there is only so much they have been able to see. The ophthalmologist typically can only measure vision from the general eye tests/looking in behind my eyes and the although the MRI’s can show that there is inflammation on the optic nerve it can’t give the doctors much more information as to what is going on. My specialist had requested I go off to Queensland Electro-Diagnostic & Imaging Centre to have an Electroretinogram (ERG) and a Visual Evoked Potential (VEP). An ERG “measures the electrical responses of various cell types in the retinal” and a VEP “measures the functional integrity of the visual pathways from the retina to the visual cortex of the brain via the optic nerve.” The other great thing about these tests is it can give my neurologist an insight whether or not my condition is a demyelinating condition or not. Both tests were done by placing electrodes in my hair, around my eyes and also a fine thread electrode put in the bottom of each eye. It wasn’t painful at all, just left me with blurry eyes for a few hours as they dilate your pupils and your eyes can feel a little tired/strained as you are staring at moving objects, flashing lights and going between lights on and lights off for 3 and a half hours.

The next day I had an appointment with my specialist to go over my last hospital admission and talk about what’s next. He mentioned that in my last MRI I had just before I was discharged from hospital, there was clear inflammation on my optic nerves specifically at the back point where the nerve connects to my brain. He also mentioned that the second set of check-up tests I had done with ophthalmology showed no improvement in my vision but on the plus side it hasn’t decreased within the couple of weeks between the testing so that is always a bonus.

In other great news my application for my new drug infliximab got approved, so after having my normal monthly blood test plus the pre-screening for infectious diseases I am now all ready to start. Hopefully next week I will get a call with my appointment time and within the next few weeks I will be all locked and loaded ready to go. It’s going to start out as an infusion once every two weeks, then it goes to every four, six, then eight weeks. I still have to stay on all my daily medications (prednisone, mycophenolate, somac, resprim forte and vitamin D) but fingers crossed the longer I am on it, if it proves to be working I will get to start reducing my prednisone … HALLELUJAH !!!

For now we just wait for that phone call with my appointment time but I have a good feeling about this drug, this is going to be the one that works and I’ll be one step closer to succeeding my goal of a full year with no hospital admissions and getting off steroids!