I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2018. Based on brain and spinal cord lesions that matched reported vertigo and sensory issues, I had experienced prior attacks, so I likely had MS since 2012. The 2018 attack that prompted the MS diagnosis was rough. I experienced numerous symptoms including paralysis in my left hand known as The Useless Hand of Oppenheim. Thus began my journey with Disease Modifying Therapies, DMTs. There are approximately 18 DMTs for MS in Canada. None of them are a cure. Their purpose is to lessen the frequency of attacks.
At the time of my diagnosis, the process in Canada was to begin with one of a few DMTs. The other more efficacious drugs were reserved for use if these had been unsuccessful and there had been subsequent attacks. Selecting Aubagio was an odd process - well odd for me, but apparently common in MS. The neurologist told me about two drugs and advised me to select the one I preferred. This was surprising to me given his training and expertise and my lack thereof, but I came to learn that this approach is common in MS treatment and is a result of the myriad of potential options of varying efficacy and risks. I had no side effects I can recall from Aubagio, but early in 2020 I had another attack, and it was time to switch to a potentially more powerful drug.
I do not have the underlying virus (JC Virus) that can make Tysabri dangerous, so this was a good next DMT to try. It is a monthly infusion drug with the side benefit of relieving some MS symptoms in some patients for part of the month. For the few months I was on Tysabri, I enjoyed 17 days per month of some symptom relief. In fact, we spent a week at a cottage that summer with such an inclined driveway, I couldn't believe I was able to make it up that steep hill. Sadly, after a few months, I had another MS attack. I was among the small percentage of people who develop the antibody to Tysabri, so I was moved off that DMT.
The timing of starting the next DMT was a few months before a vaccine for COVID19 was to be released. My neurologist was advised by a more senior neurologist to factor in the DMT's effect on my immune system as it could make the COVID19 vaccine less effective. I went on Mavenclad and had some minor side effects but was able to mount an immune response to the COVID 19 vaccine. 'Sigh', Mavenclad ended up being another DMT that did not reduce the frequency of attacks. I was having a Multiple Sclerosis flare up every 6-8 months. Time to try the 'gold standard'.
I heard good things, from other MS patients and from studies about the effectiveness of Ocrevus (infusions) and the similar drug Kesimpta (injections) for reducing the frequency of MS attacks. I started Kesimpta in January 2023 and had an attack shortly thereafter. That said, because it would not have been possible for Kesimpta to be working that early on, I stayed on Kesimpta during and after that attack. I am teary as I write this. I am deflated that a few weeks ago, I was struck by another MS attack, the 7th attack I have had since April 2020. I am scared about the frequency of attacks and how each one leaves me with more daily/ongoing symptoms. I have sensory issues, numbness, electric sensation, heaviness, clumsiness in all forearms, hands, calves and feet. I have foot drop in both feet. I have fatigue that requires me to nap 2 times a day. Currently, to safely walk more than approximately 10 meters, I need to hold onto someone, use a walking stick or trekking poles. Time for a new plan to support the management of my Multiple Sclerosis.
After 4 failed DMTs, accompanied by some lifestyle changes and 6 months of traditional Chinese medicinal tea, it is time for another opinion. I am hoping that an upcoming appointment at a research-based MS clinic in New York City will present me with some productive options to reduce the frequency of MS attacks.
I hope that my fellow MS warriors have had better outcomes with their DMTs. Thinking about all of you and wishing you as much manageability as possible on your MS journey.
51, Canada, RRMS, DX 2018, Kesimpta