I feel like a drug addict huddled in some obscure alleyway. Instead of being huddled behind a garbage dumpster, I am at my kitchen table. A nurse from the drug manufacturer was sent to teach me how to self-inject. I sat at the table with the nurse and my squeamish wife. Needles don’t bother me, but, for some, the thought of a needle diving through the outer layer of skin with no resistance can be debilitating.
The nurse was very kind. She brought all the goodies we would need to get the injections rolling. There was a kit I would need that included a self-injector, a clip to render the needles one-use-only, a carrying pouch for travel, and a very nice notepad to log my daily practice. She also brought practice needles filled with a saline solution to inject into a beanie bag.
It took me one time to learn the technique through practice. Then I had the opportunity to my body’s introduction to Copaxone. I followed all the instructions for the subcutaneous injection. I confidently pulled up my shirt to reveal the fatty tissue around my belly. The nurse pointed out that there are seven points on the body where fat accumulates into perfect injection zones. I told the nurse that the point at the rear of my upper arms have very little fat zones. I’ve been working out in the gym every day. She took one look and assured me it was definitely a suitable location.
The ego takes a hit. I prepared the needle and picked out the fattiest spot close to my belly button. As I brought the needle, encased in its injector, to my belly, I couldn’t help but notice my wife with her head twisted sideways, as far away from looking as possible. She really doesn’t like needles.
From that point on I self-injected, almost without fail.
Several months later I am back at UBC with a follow-up with Dr. Kastrukoff for a check-up and a follow-up with the medication. I find out through conversation that Dr. Kastrukoff was one of the neurologists involved in the drug’s trial study in Israel in the early 1990s. I’m definitely in the right hands.
He then gave me a form that would enable the clinic to contact me in the event of a trial study taking place through the UBC clinic.
I had that “ah-ha” moment.
I have been given the gift with this MS. It’s not a kind gift, but still a gift – I can get involved in research to help prove or disprove new therapies. Up to that point I had been reading many articles, and all the excitement in the world of MS, about a treatment called Liberation Therapy (Chronic cerebrospinal venous insufficiency- CCSVI). It was introduced in 2009 by an Italian vascular surgeon named Dr. Paolo Zamboni. The theory at the time was why send in an electrician when it’s a plumber’s job. He theorized that there was not enough blood flow to and from the brain and that caused MS. He experimented first on his wife, who has MS, then convinced the MS world of its remarkable findings. He had not done any trial studies, just anecdotally convinced the MS world of his finding a cure.
The medical community was skeptical. And rightfully so.
A good portion of those who suffer the effects of MS were not, and sought out the treatment. Many travelled to far-away lands with shady and unscrupulous practices. People died getting this unproven treatment, yet others still sought the treatment in large numbers. I looked at the cost in California at a clinic in Newport Beach. The treatment’s cost at this California clinic was $11,000 and follow-up treatments were $8,000.
I could not wrap my head around the theory and lack of evidence that it was “the solution” for MS.
I received a package in the mail requesting my involvement in a trial study. I don’t remember what it was for, but I declined as the risk was too great. In 2013 I received an offer to be involved in a trial study co-hosted at UBC for CCSVI. As I was skeptical of it, I could not get over all the anecdotal stories that spoke of its remarkable results. I had also read a growing number of articles where people paid top dollar in counties, such as Poland and Mexico, only to find that they only felt marginally better for a short period of time.
I thought this was an opportunity to be involved in a trial study that could prove, or disprove the CCSVI theory. It went so far in Canada that there were yearly national meetings with guest lecturers on the subject of CCSVI.
So I did it. I had the surgery and the sham surgery without knowing which was which. First time I was nervous. The nurse came in, shaved one side of my pubic hair, then, naked as I can be, went through the surgery. I teased around with the nurses a bit. Then they went on with their business. A year later I did the same thing. This time the same group of nurses teased me. “you’re the cop that was here last year,” one of them said. Me laying there, naked and fully exposed.
After the first I went home and didn’t feel any difference in how I felt. After the second I went home and swore I had more energy. It lasted less than six months and back to normal. I guessed I had the procedure on the second surgery. Results came in by way of letter from the study group.
I had the procedure at the first surgery. Here’s the link when trial results were made public: https://www.centreforbrainhealth.ca/news/2018/10/30/clinical-trial-results-put-liberation-therapy-controversy-rest
My feet are still numb and I have a serious hitch in my step. Next Up – Stem cell treatment.
I definitely have MS.
On The Road With MS 