Struggling with depression after learning my MS has progressed
Discouraging MRI results have me leaning on my support system
Two weeks ago, I was notified that one of the lesions on my brain has grown. This led me and my care team to decide it was time to switch multiple sclerosis (MS) treatments.
Soon after I was diagnosed with relapsing-remitting multiple sclerosis in 2017, I was put on Copaxone (glatiramer acetate injection), but soon realized the schedule of three weekly injections didn’t fit my lifestyle as a high school senior. Months later, my neurologist at the time switched me to Gilenya (fingolimod), which kept me stable for years, except for one relapse in 2019.
Fast forward to now: Because my recent MRIs show mild MS progression, I will be switching to Kesimpta (ofatumumab) within the next few weeks.
My current reality
A week before my MRIs, I began struggling with depression. I believe this happened because there was a voice in the back of my head and a feeling in my gut telling me something bad was on the horizon.
During this time, my appetite essentially disappeared, and when I did eat, I was extremely nauseous. I also slept a lot more than I had in previous months. My work and school productivity began to slowly decrease, and I had no idea why it was happening. But when I received my scan results, it all started to make sense.
Now that I know my MS has progressed, my depression has worsened. Over the past week, I’ve been sleeping in late and taking naps throughout the day, which is extremely unlike me. I’ve also watched my favorite comfort show, “New Girl,” in its entirety two or three times — something I haven’t done in a while. Normally, I’m up and at ‘em early in the morning, working and cleaning, but I haven’t had the motivation or energy to do so recently.
The other day, I was having a conversation with my partner when I realized that I’ve been struggling with depression — and that’s completely OK. At the end of the day, I’m a human with feelings and emotions, and right now, I’m beyond scared. I constantly remind myself that I don’t always have to be strong and that it doesn’t take away from who I am as a person.
I just thank my lucky stars that I have a wonderful support system that will be by my side during these difficult times. Even though most of my family lives in San Antonio, Texas, they are never too far or too busy to come visit me in Austin. I’m also eternally grateful to have such a loving and caring partner who does more to take care of me than I could ever ask. He is my home away from home, which makes these dark days much less scary.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Dorothyanne Brown
My depression always gets worse when my MS is having a flare-up. Over the past 16 years since I've been diagnosed, I've learned that it will go up and down over time and it doesn't mean it will stay forever (the depression, not the MS, alas!). That said, I'm medicated for it so I can do stuff. It helps. Hope you feel back to "normal" soon...
Janet Biddlecombe
My husband has had MS for the past 50 years now. It has gone from relapsing remitting to the secondary progressive stage, and he gets increasingly disabled and anxious. He was on Ocrevis for a few years, but at this stage there’s really not anything for him.
Erik Johnson
In 13_years I've been on 3 DMTs .It wasn't until I was diagnosed with active SPMS about 6years ago I was put on Kesempta and in that time I've had notable slow down of progression and no side effects, no new lesions! Knock on wood! Good luck with your MS
Don Wilson
I was diagnosed in 2002 with MS. I have had several relapse's through the years. My latest mri was really a surprise. My neurologist showed me that my brain lesions have actually improved . He believes that Ocrevus is the reason for the improvement. I have been on Ocrevus for a little over 2 years. I was on Copaxone pretty much the whole time until this.
Jennifer Stuebner
You can't overthink the progression - MS is a progressive disease. I progressed constantly my first year after diagnosis and for several years after that - with up to 8 catastrophic flares that left me unable to stand or walk for months at a time and left me without any functional use of my hands for nearly 18 months and mostly bedbound - all in my first year. After that, I had fewer and milder flares each year and have had a few years with only one mild flare and mild progression - but life goes on and these days if I plan things out I can do most things - just at a slower pace - but I'm in my 50's now, so I'm pretty sure I'd have a slower pace now than decades ago anyway. Even the natural aging process is progressive for healthy people. It's the way our bodies work. In all honesty, there's a good chance that if you take care of yourself - in a few decades from now you may find you can still walk better have better general health than your "able bodied" friends. You really can't overthink it or let it get you depressed. In the whole scheme of things having a bigger lession show up on an MRI is sort of like getting a B on a test. It may not be what you hoped for, but has it really changed the trajectory of your life? Chances are if you're still walking around ok and able to participate in your favorite hobbies or go out with friends, it hasn't really changed anything too much. I can understand the concern, I used to freak out each time I had an MRI and I had so many lesions that just would note the regions and list how many dozen they estimated in that region and which ones were the enhancing T2s or larger. It was scary since so many people on the MS blogs I belonged to only have 1 or 2 or 5 lesions, but in the whole course of things, it was just like my body's report card. I had a few bad semesters but I'm doing much better now, so I've let go of the past. Stress and depression make the disease worse, so concentrate on the things you're able to do and make the most of the good days.
Geetha Pillai
Just diagnozed with MS, trying to understand more abt this condition.