When we went in to the doctors office and sat down, he pulled up my new MRI. What I noticed first was that my lesions had shrunk and they were no longer bright. In my previous MRI, they were like bright white planets in a sea of grey. Now they were greyed out themselves and had shrunk considerably.
I thought the doctor would have good news and talk about how the lesions had grown smaller. The first thing he said was: “There are three new lesions. We have to put you on level two medication.”
This was a shock to the system as I’ve been on Copaxone for less than a year. I should have had a follow up MRI around December, but they didn’t schedule one. The new lesions could have formed between the time from the old MRI and when I started taking my medication.
The new medication they wanted to put me on was an oral pill as opposed to an injection. It would cause depression, anxiety, neausea, dizziness, vomiting, etc. Pretty much all the symptoms I’d had when the MS first hit.
My immediate response was a huge no. That and feeling as if I was being hit with a truck. I was shocked that they wanted to put me on new medication right away. I’ve worked so hard to leave how I was in the past and this felt like welcoming it back again.
However, the ups and downs weren’t done yet. It turned out that I wasn’t eligible for the new medication as I haven’t had a relapse. I had a lapse in January but have yet to have a relapse. Though I have been diagnosed with Relapse and Remitting Multiple Sclerosis, since I’ve only had the one lapse, I actually have Clinically Isolated Syndrome. Thus, I am not eligible to take the new medication.
The doctor and MS nurse then said I could obtain the new medication if I took part in a study where I would be given one of three doses, depending which group they put me on. It would be half the normal dose, the normal dose or a larger than normal one. I would have to go to the hospital to be checked over several times a week to see how the new medication was taking effect.
Like most people, I hate hospitals. However, the situation being what it is, I’ve come to accept that it’s just part of my life now. However, the less time spent in hospitals the better. I was terrified at spending more time in a place that I didn’t like, of being poked and prodded in the name of science.
My mother and I went into the waiting room to talk about what I should do. She said my gut and my intuition is usually spot on. What did I want to do? My response was still no. I had worked so hard to get over those symptoms. I still live with some of them, but the depression was gone, the dizziness, the neasuea. I didn’t want those back again. I know that eventually I would have to go on stronger medication, but this didn’t feel like the right time.
The doctor and nurse came into the waiting room with more news: the study wasn’t an option for me. It was only for people who had full on Relapse and Remitting MS, not CIS. They said they would have to wait for me to have a relapse in order to get me on the stronger medication and I was to let them know if this happened. I said “It sounds as if you’re just waiting for me to have a relapse.” The nurse responded that, at this time, that was all they could do.
I was still in shell shock mode. A hospital is a highly emotional place and mine were at the breaking point. We left and walked out into another part of the hospital and my mother could see I was in rough shape. I had been trying hard not to lose it, not to break down and cry while the doctor delivered his blows.
So she did something that I am incredibly grateful for: she pulled me into a hug and let me cry on her shoulder. I let it all out while my mother held me, whispered that it was okay to cry. We both felt as if we were hit by a truck and dragged over the coals.
It was the first time I’ve cried a cry of release. Normally, I only cry when books, movies or people stir up my emotions. This time it was a torrent of tears not in anger or frustration, but in release, of letting go, of being able to breathe once again.
What the doctor and the nurse should have done were a few things: comment on the fact that the lesions were healing, that they had shrunk and greyed out. They should have checked to see if I was eligible to take the new medication or for the study before I arrived for the appointment. They didn’t. They turned what should have been a simple update appointment into an emotional roller coaster.
Still, I’m focusing on the positive: my lesions have shrunk and are healing. I’m so much better than I was before what with a new diet, Reiki, balance. This is my life, and I will live it to the fullest any way I can.