Multiple Sclerosis drugs and my first neurologist – I was asked the other day in the comments forum on reddit about the medication I take for Multiple Sclerosis. The question caused me to think back to when I was first diagnosed and my first neurologist. I’ll be starting with neurologist #3 next week.
I met my first neurologist in 2007. He is the man who diagnosed me with Multiple Sclerosis. I remember the appointment vividly; I sat in his office while he reviewed my MRI and calmly told me I had MS. I was then moved to another room where a nurse went over my medication options. I was told to start taking Rebif and given a prescription. I was then sent on my way with some literature about the drug. When I got home I read through the info and thought, “you’ve got to be kidding me?!” Lets just say that statistics offered by the drug companies weren’t exactly compelling when it came to the success rate of the drug. I remember reading something to the affect of, “in 30% of patients, exacerbations are reduced by 30%.” Whoah, 30% of 30%? Then I read the list of potential side affects.
Not impressed or feeling at all hopeful. This was the moment I started researching the disease on my own and which brought me to the conclusion that diet and exercise, not drugs, were my best bet.
Over the next six months I began modifying my diet, exercise habits, and started to incorporate meditation and yoga. The result is what you can read through on this website today. I never took Rebif and I managed the disease for 4 years without incident and without any medication. The sad but comical part is that two years after my first neurologist prescribed the Rebif I was back in his office for my annual checkup. He examined me and felt I was doing extremely well. He told me to stop taking the Rebif. I looked him dead in the eye and told him I never did.
After that appointment, I felt maybe I needed a second opinion. I scheduled an appointment with a new neuro. The new doctor ordered another MRI, but the result was the same. He confirmed I had MS. He asked me about treatment and I told him how I was ‘self treating.’ To his credit, he didn’t speak down to me, rather he reviewed some studies with me that showed how DMT’s (disease modifying therapies/medication) had been proven to lessen the amount of disability in MS patients over a long period of time. He reviewed a number of MS drugs with me and let me make the decision on my own.
At about the same time, my wife and I were expecting the birth of our daughter. I reviewed all the information and had a change of heart. My goal was never to prove the doctors or anyone wrong; my goal was to be as well as I could be. The new information given to me by my new doctor was far more compelling than the information given to me by the nurse years earlier. I decided to start DMT therapy as I needed to know that I was doing everything I could to give not only myself, but my family the best chance. I started on Copaxone a month later. The reason I chose Copaxone was pretty simple- it had the shortest list of side effects.
I have been using Copaxone for about 20 months now. I tolerate it well and I have had no issues. I find it ironic that I had no relapses while I was self treating for four years without the drug, but I am struggling with a mild relapse less than two years into using the drug. I am forced to wonder about my decision, however, it is also possible that it is the Copaxone which has caused this attack to be mild. As with most things with MS, I have no way of knowing.
I have run 7.25 km, 4 km, and 8km in the past 6 days. I feel I’m ready to get back at the MS Eater!. The running is definitely helping cure the extreme numbness and I’m starting to feel pretty good and the ‘fog’ seems to be lifting! Just in time for summer!
Until next time,
Latest posts by Sean (see all)
- YEG MS Episode 23, “MS in History Part 2.” - August 18, 2017
- YEG MS Podcast Episode #22, “MS in History.” - August 8, 2017
- YEG MS Episode 21, “It’s been awhile and….Marijuana and Multiple Sclerosis?” - July 4, 2017
- YEG MS Episode 20; Fat Bikes 4 MS & Kevin Gest - January 30, 2017
- What works for one doesn’t work for all - January 11, 2017