So I didn’t obviously get a lot of sleep New Years Day night. It was earlier than I expected that I was taken down to have the MRI done. For those who can recall their first MRI, or for those that have not had an MRI, it is a unique experience. Only now, after having so many, have I grown a custom to them to the point I can literally fall asleep inside. they are noisy to the point you think the machine is breaking apart. The noises are very unique and specific to an MRI scanner.
All we could do now is wait for the results. The same doctor from the day before came to see us. Thus time she had a colleague with her. His name was Dr Patry, a neurologist with the MS clinic in the hospital. Over the course of the coming years I would develop a strong relationship with Dr Patry. He is a very to the point matter of fact person. Not to say he doesn’t have bedside manners but he is straight forward. He said the results of the MRI are in line with MS patients, explaining I had multiple lesions in areas of the brain consistent with MS. Given the sudden onset of symptoms he did not want to give me the diagnosis of MS until a tracking period of three months to see, symptomaticly, what happens.
This “waiting period” is called CIS, Clinically Isolated Syndrome. Her prescribed me 1420mgs of Prednizone every other day for three weeks. For those that may not know, Prednizone is a steroid pill. While in hospital for Charlie in 03′ I was given half a tablet a day. This was 23 tablets at once every other day!! I learned this aggressive dose is common for those with MS experiencing attacks of this nature.
The next few weeks were rather interesting and honestly difficult to remember. The Optic Neuritis made it impossible to watch TV or read a book. I ended up laying down playing 007 movies lol. To this day when I watch the older ones I recall just listening to them that winter. My mom would pick me up to go to her house once and a while. As a big hockey fan of the Calgary Flames, I do remember watching the games with my mom and laughing at how there were two pucks & two if every player on the ice! Sounds funny and was at the time but just think how it actually felt all joking aside. One memory I have that is still vivid in my mind, was looking out the window of my moms car taking me back home. It was dark outside and I was looking at the city lights of Calgary. There was one set on top of another, I began to quietly tear up quietly. By this time Dr. Patry had expected an improvement in my vision. All I could think was what if it would never get better? Is this going to be my new life? What do I do???
Through the course of time my vision did improve. It took seven weeks before I could go back to work at restricted hours and duties. It took a long time to battle back to normalsy. We did our best not to focus on what would come of my appointment in March with Dr. Patry. I did experience and document things that would pop up. One most noticeably was laying in bed one night, my feet felt ice cold. I put two pairs of socks on and Gina tucked them in blankets. I still woke up in the middle of the night because they were so cold. Gina felt the skin and just looked at me. They were warm but I was still fighting back tears because they felt like they were going to fall off.
Soon March came. Before seeing Dr. Patry I had another MRI to see if there were any changes from January. Me being me, I think work I had a Drs appointment but would be in for the evening. Gina and I went in together to see Dr. Patry & hear the results. We sat down with him and he showed us the MRI results compared to January. There were more new lesions identified by the colour tone in the brains grey matter on the scan. He pointed out that there is evidence of active disease from what he estimated to be at least 10yrs. That combined with the symptoms I have been experiencing he felt I had an aggressive form of Relapsing Remitting MS. Aggressive given the nature of onset and the close time gaps between symptomatic relapses in just the three months. There were other things, but too many to write down in this blog.
He answered as many questions as he could and set up the next appointment. Then we met with the MS nurses. These are amazing ladies. We were overwhelmed with the confirmed diagnosis. The nurse we met with was and continues to be amazing. She slowly went through the treatment options. At one point Dr Patry interrupted and recommended to the nurse to discuss Rebif with me given my past history of autoimmune disease. The nurse sent us home with booklets and phone numbers for all the options. She gave a time limit to decide. Which in retrospect makes sense. Without a deadline I could be making my mind up to this day! Lol
As Gina and I were walking back to the car, we just looked at each other, not knowing exactly what to say. I was shaking, she was holding back tears. I was obviously not in the frame of mind to work. I called in and said I would be staying home.
That night was the first night I lost control of myself. We were laying in bed and I just broke down completely. I looked at Gina and told her I would completely understand if she wanted to walk. She broke down, grabbed my face and said she is not going anywhere. We are getting married and are in this together forever. I just couldn’t and still can’t understand why this happens to me.
As I have learnt, before this and since, if I don’t fully understand the condition I have I must trust the doctors. I called the MS nurse back after a few days and decided to go onto Rebif. I sent in and called my insurance company and got the process going. To my surprise, the treatment was covered 100% through my benefits at the time. Shortly after I picked up a three month supply and a nurse from the drug company was I. Our apartment to show me how to administer the needle.
Needless to say, this was yet another lifestyle change for me and now for my fiancé. I experienced some initial reactions to the shots but nothing extreme. Around this time I had begun to reach out to the local chapter of the Multiple Sclerosis Society of Canada, which I will get into in my next post. Even to today, it’s an emotional experience to look back. I imagine it will be for the rest of my life.