Five Years Down and Forever to Go
Five years ago today, I faced words that I never thought that I would hear: “you have Multiple Sclerosis”. I went from being a relatively healthy 36-year old to living with a progressive and degenerative illness. Faced with this diagnosis, I worried about where I would be in five years time. Would I be able to work and contribute to my family? I worked hard to become a lawyer, would I be able to meet the needs of such a cognitively demanding career? Would I be able to be the mom that my son deserves? Would I be able to run, or heck, even to walk? Would I be able to escape to the backcountry and enjoy canoe-tripping? Five years later, the answer to all of those questions is yes. This deserves a moment of celebration. I’m still working in a career that I love. I’m still a contributing member of my household. I’m still an involved and active mom. I’m still walking, running, and even completed a 10K this year. And I’m still backcountry camping, having just completed a 9-day backcountry canoe trip earlier this month.
Reflecting back to that fateful day in 2021, I am so grateful to know that my worst fears about where I would be in five years were not realized. Before I faced my MS diagnosis, I took all of these things for granted. Of course I would still be enjoying my career as a lawyer. Of course I would still be an involved and active mom. Of course I would still be running and canoe-tripping. But once MS entered my life, none of these things were guaranteed. So as I reflect back on five years of living with MS, I celebrate arriving at this anniversary with all of these abilities that I once took for granted still intact.
This being said, it hasn’t been all good news in these past five years.
The tingling sensation that I have in my left arm and hand has progressively worsened over the last five years. It used to be the case that I only experienced this tingling when I exercised vigorously. Around the 3km mark on a run, I would start to get a mild pins and needles sensation in my middle, ring, and pinky fingers of my left hand. Now I have a mild pins and needles sensation in my entire left arm and hand at all times. To understand what that feels like, think of a time when one of your limbs has “fallen asleep”. If that is a 10/10 pins and needles sensation, this is usually a 1/10. Sometimes when I’m stressed or cold, this rises to a 2/10 or 3/10. Running still triggers it to temporarily worsen. This progression is likely a sign of “smouldering MS” or Progression Independent of Relapse Activity.
On my fifth anniversary of living with MS, I find myself back in diagnostic limbo. I had a catastrophic gastrointestinal hemorrhage on January 27, 2026. You can read more about that in my previous blog post, titled Plot Twist: Surviving a Catastrophic Gastrointestinal Hemorrhage and Discovering my Immune System is at is Again. This was, objectively, a terrible time. Since then two CT scans, a colonoscopy, an upper endoscopy (esophagogastroduodenoscopy), and a capsule endoscopy have all failed to identify the cause of the hemorrhage. However, the colonoscopy and capsule endoscopy revealed inflammation of my cecum (where the small and large intestine meet). This inflammation is believed to either be caused by Crohn’s Disease or by drug-induced colitis as a result of taking Kesimpta. My five year anniversary with MS happens to fall on colonoscopy prep day, as one or more further scopes will be needed to assess whether I now have a trifecta of chronic illnesses (Congenital Adrenal Hyperplasia, Multiple Sclerosis, and Crohn’s Disease), or whether Kesimpta was wrecking havoc on my gut. Keep your fingers and toes crossed for me. I am hoping that tomorrow’s scope will find that this inflammation is resolving now that I’ve been off Kesimpta for a few months.
My most recent MRI in February also returned evidence of a new spinal lesion. Between Kesimpta being a suspect in my gastrointestinal woes and the new lesion, I had officially “failed” Kesimpta. To be honest, I hate this language. I didn’t fail Kesimpta, Kesimpta failed me. So my five year anniversary of living with MS also finds me on a new Disease Modifying Therapy (DMT). Mavenclad is a selective immune reconstitution therapy. It works by targeting and temporarily reducing B and T lymphocytes. B and T lymphocytes mistakenly attack the protective myelin that insulates nerve cell axons in those living with MS. Mavenclad is a chemotherapy agent which has been repurposed for MS. It accumulates in B and T lymphocytes and mimics DNA, thereby becoming incorporated into the cell’s DNA. This triggers cell death (apoptosis). Over time, the immune system rebuilds these cells, but ideally in a less autoreactive form. Think of it like doing a hard reboot on a computer that’s acting glitchy. Rather than leaving the system running and fixing bugs as they pop up, we’re shutting the system down, clearing out the malfunctioning parts, and hoping that things run more smoothly when back online. Here in Canada, Mavenclad is a second-line DMT, meaning that you have to have “failed” another DMT (or as I prefer to think of it, to have had another DMT fail you) before you are eligible to take it. I took my year one doses of Mavenclad in June and July, and I’m now in lymphopenia. Lymphopenia (a low lymphocyte count) is a serious and expected side effect of Mavenclad. Lymphopenia weakens the immune system and it can lead to frequent, long-lasting, or unusual infections. While in a state of lymphopenia, I will be more susceptible to viruses, bacteria, fungi, and parasites. I will have to be extra careful while in lymphopenia, including frequent hand washing, wearing a mask when in indoor crowded places, and avoiding high risk environments. I currently have a monthly date with Life Labs to monitor my lymphocytes. My lymphocyte count will need to rebound before I can complete year two with Mavenclad. After my year two doses, I will not need to take a DMT again so long as Mavenclad continues to work. I like the idea of having a fully functioning immune system back after 4.5 years of constant suppression while taking Kesimpta. It will take a while to get there, but I’m hoping that I get a long stretch of years without MS disease activity while enjoying the perks of a fully functioning immune system.
On my fifth anniversary of living with MS, I find myself facing the same trepidation that I felt five years ago. Where will I be five years from now when I reach my tenth anniversary? Will I still be able to work and contribute to my family? Will I still be able to be the mom that my son deserves? Will I still be able to run and walk? Will I still be able to escape to the backcountry and enjoy canoe-tripping? What I’ve learned from living these past five years with MS is that there’s no way of knowing the answers to these questions until I get there. Living with a progressive and degenerative illness means living with uncertainty. The only way to know if I’ll still be walking in five years time is to keep putting one foot in front of the other until I get there. Five years ago, I wanted a crystal ball to tell me where I would be today, and today I still want that crystal ball to tell me where I will be in five, ten, or twenty years. There is something profoundly frustrating about knowing that, at some point, decline is coming. The goal of treatment is not to cure the disease. Frustratingly, there is no cure for this disease. The goal is to delay the inevitable for as long as possible. It’s not the most uplifting treatment plan. I worked with a therapist earlier this year to help me process my near-death experience in January. She reminded me that tomorrow is not guaranteed for anyone. Anyone can get sick. Anyone can have an accident. MS just gives that uncertainty a name and a higher probability.
There have been plenty of moments over the last five years when I have looked at my health prospects with a pretty dismal view. I still have those moments. But I try to remind myself to spend less time mourning the future that I may lose and more time celebrating and appreciating the pretty great present that I still enjoy. The therapist that I worked with told me that we overestimate risks and underestimate our own abilities to cope. This is likely true. On this fifth anniversary of living with MS, life looks nothing like the worst-case scenario that I dreamed up five years ago, and I have managed to overcome some really difficult challenges in that time.
