It’s been a while. I’ve needed some processing time. In November of 2018 I met with my neurologist for my annual once over. He gave me that once over, observed that I still walked with much difficulty, then asked how things were. I carefully unloaded how I felt about my current, and constant, state of affairs.
“There has to be something that can fix this?” I said. “I would really appreciate the chance to walk normally again,” I added. I’ve been waiting for some kind of spontaneous fix, but it hasn’t happened. I’ve been waiting to read about the research team that found a cure for MS by studying the link between MS and a hippopotamus.
I relayed to him the story of a woman I had met while I was volunteering for the MS Society. She has MS, and unlike me, she had no visible signs of disease. She and I spoke briefly about the illness, and its unpredictability. “A year-ago I was in a wheelchair,” she said.
I was floored by that statement. What? How is this possible? Was it the result of a new treatment? A new diet?
“What have you done to change your situation?” I inquired. She could provide no answer. Her walk just became better without explanation. It gradually improved over the course of a year.
I’m telling my neurologist the story of this woman and I asked him how this is possible. “Is MS that weird that a person can just go from a wheelchair to walking properly,” I asked.
He said it’s uncommon, but certainly does happen. He explains that there are different variations within the disease and some of its activity is completely unpredictable.
I restated my want of a proper walk. I would like control over my left side.
“Give me a minute,” he said, as he walked out of the examination room. Little did I realize it was going to be more like give me the next four years. After 10 minutes or so he came back with an encyclopaedia-sized booklet that contained several mini-booklets.
“Have I spoke to you about Lemtrada before?” He asked.
“I’m not sure,” I said, “that doesn’t sound familiar.”
I thumbed over the package and briefly read the outside literature. The packaging had a familiarity to it, but why, I didn’t know. He relayed several stories of other patients he has put on the medication and the very positive results they’ve had. One of those was of a Police officer who went from not working due to disease activity, to being fully recovered. Not all the results have been that positive, but most are encouraging. He explained that it’s a very aggressive form of treatment as it’s a highly powerful drug. He explained the process by which the medication is administered and also the commitment of four years of monthly blood tests.
“You don’t have to make a decision right away,” he said, “I’m told we can start you on it as early as January if you’d like.”
I told him I need to think and talk it over with my family prior to making any decision.
Lemtrada is a very powerful drug that is administered via transfusion. The transfusion is administered for five days in the first year. Then, after a complete year off, three more days of infusion. The infusion consists of the drug along with some steroids to help cope with the drug’s action on the body. There’s also four-year commitment to a monthly blood test to ensure the body is not having adverse reactions to the drug. I’m told that there’s a very small chance of getting cancer, thyroid issues, or perhaps kidney damage (amongst a few others). It’s the drug of last resort when nothing else is effectively works.
I left the room with the doc working on getting the transfusion process rolling for me. He knew I was going to say yes. He could tell I was at the point of being done with my marriage to MS.
I walked into the lobby, sent a text for a ride, then sat down with my package in hand. I turned it over several times. I glanced at the wording on the package which I’m sure said something. I didn’t need to read it as I’ve already made up my mind. I think this is going to be the beginning of a great new, perhaps risky, adventure for me.
My feet are still numb so it better be worth it.
On The Road With MS 