Well that CCSVI was a bunch of anecdotal nonsense. A good majority of MS sufferers are constantly searching the web or talking to others in search of the next grand solution to what ails them. An illness like this can lead one to believe anything and blindly follow a small portion of the herd. Anecdotal stories do not prove a treatment, especially an invasive one, is safe or works to control MS.
I am looking for something tangible. Something backed by research – not stories. While on the CCSVI clinical trial, I had the opportunity to meet a lot of different people who have MS, and a lot of neurologists in training. Some of those neurologists were from different corners of the world – like Germany and Australia.
For one of my first CCSVI meetings I had arrived early in the morning to an empty Clinical Trials building. I found a seat and waited in the solitude. I had just finished the four-hour drive from home to get there ‑ so I could use the rest. While sitting there I could, from out of eyesight I heard the clip clop of footsteps in the hallway. The guy got to where I was, sauntered up to a chair, sighed, and sat down. He wore a plaid shirt, blue jeans and cowboy boots. He looked around at the emptiness of the building. He looked at me, gave me a slight head nod, then looked down.
“Are you here for a clinical trial?” I asked.
“Yup,” they’re really getting to know me in there,” he said, thumbing towards the clinic doors.
My first observations of this fella were wrong. I assumed, based on his walk, that he was there to support someone else. Curiously, I asked if he was involved in the CCSVI trial. He stated that he was not because he did not have relapsing-remitting MS.
Now curiosity has the better of me. I walked in with a serious hitch on my left side. He walked in like a confident gunslinger. The only thing missing was the Clint Eastwood whistle.
“Oh,” I said, “you walk very well.”
“Yeah, my neurologist is very surprised that I am doing so well as this has taken over my spinal cord,” he said. “I should be bedridden according to them.”
“I’m just too stubborn to let this slow me down.”
Here, holding on to my new cane, I thought I was the stubborn one.
He said that his MS affects him in other ways. There are frequent times that he would be sitting in the living room watching TV, and would feel a sudden rush of warm water flowing down his back. The first time it happened he looked up to the ceiling. I asked him about pain. To which he said he lives daily with pain – sometimes excruciating pain that comes on without warning. I feel fortunate, as I have no pain ‑ although I admit I was jealous of his confident walk. He asked if I was from Vancouver. I told him I drove in from Kamloops to which he replied he is also from Kamloops, and just flew in and will be flying back in the afternoon.
Great, I thought, I have to drive another four hours to get home. I told him he was fortunate to have that luxury. He said he has a very supportive employer.
He went off to his appointment, and I to mine. As I walked down the hall I had an opportunity to say hello to Dr. Hashimoto. To my surprise he remembered my name. He passed away the following year.
At the conclusion of the CCSVI trial, Dr. Kastrukoff pulled me into his office to inform that he was moving out of his practice to focus on his research, and I would have to get another neurologist. I had developed a relationship with Dr. Traboulsee during the clinical trial and he had agreed to take me on as a new patient.
While wrapping up the CCSVI trial, Dr. Traboulsee invited me to take part in a stage III trial for the drug Ocreluzimab. His hesitation would my recency with the CCSVI trial that could exclude me from the main trial. But, he said I may be able to take part in the secondary trial that is studying a different aspect of Ocreluzimab. He gave me the paperwork, and I went home to learn about the drug. I agreed to take part, and quickly attended the local lab to get my bloodwork done.
I tend to get quite chatty so I got into a conversation with the lab tech. I still had the visible remains of a puncture wound in the crease of my left elbow which she inquired about. I told her that I was just involved in a trial study at the UBC MS clinic.
“Oh, so am I,” she said, much to my surprise.
I guess I was surprised because she had no visible signs of the dis-ease.
She said she is involved in the Ocreluzimab study, and is looking forward to her upcoming infusion. Ocreluzimab is two infusions spread apart by two weeks at first, then once every six months. She said the drug has made a huge difference in her energy. She found that close to a month prior to the infusion fatigue sets in.
After that conversation, and some Ocreluzimab research, I looked forward to taking part in the clinical trial. Two days after the blood test I received a phone call from the MS Clinic. I was denied entry to the trial part because of the CCSVI recency.
Bummer. My feet are still numb and I have a serious hitch to my step which now requires a cane.
While this is not an endorsement of the drug I have provided an informative link to Ocreluzimab: https://www.everydayhealth.com/columns/health-answers/what-people-with-ms-need-to-know-about-ocrelizumab/
On The Road With MS 