Overcoming the Loneliness and Isolation of Aggressive MS
“Hurricane MS,” which is how I refer to the aggressive nature of my MS progression, happened quickly and mercilessly. I am aware that my case is particularly unusual, given how aggressive its onset was. This is one of the reasons I feel a sense of purpose in sharing my story with others — I’ve experienced treatments and complications that others have not, or at least none that I could find at the time.
It was an incredibly lonely place to be. As I’ve learned, it’s much more difficult to advocate for yourself in the moment than it is to advocate for others.
I searched the social network Shift MS, MS charity websites, and other places on the internet to find answers and common ground, to little avail. There were even times my doctors had to confer and deliberate as to how to proceed since I was not an everyday case.
Starting from the beginning, my first symptom was facial numbness and blurred vision. I was initially told it was probably a stroke, then a brain tumor. My scans were sent to specialists in London for consultation. It was a lonely time without my husband there, as he’d moved into our new home across the country while I finished my notice period at work.
I was prescribed dexamethasone and morphed overnight into a chipmunk. It hurt, but it did resolve my symptoms, which meant no further tests were done because I was “better.” In hindsight, the scientist within me who strives for answers should have pushed to find out the cause. What’s that saying? Hindsight is 20/20, after all. This was a major lesson in my self-advocacy and patient advocacy journey.
Not knowing what was wrong with me, coupled with moving somewhere new and interviewing for jobs, simply made me feel more isolated.
I still had the steroid “moon face” when I started my new job, which made me incredibly self-conscious because I didn’t know anyone and no one knew me. I felt it called my competency into question, which is less than desirable in a new workplace. Four months later, I was back in the hospital having tests done for what we now know was optic neuritis, which further added to the feeling of isolation.
Eventually, I was diagnosed with relapsing-remitting multiple sclerosis in 2016.
I was due to have Lemtrada (alemtuzumab) for my disease-modifying therapy, but screening surprisingly determined that I had latent tuberculosis. This delayed Lemtrada further, because I was required to have a three-month course of antibiotics — and that was after waiting for the neurology and respiratory teams to meet to come up with a plan.
I researched to try and make sense of the situation. I looked for others who had been through the same thing. I was looking for company, someone who knew how this felt. There was one lady on Shift MS who was three months behind me. She was the only one I encountered who had experienced something remotely similar. But being three months behind me, she had fewer answers than I did. I remember feeling so lost.
The fact is, I was then paralyzed before I could receive Lemtrada due to the delay. Of course, I understand the necessity for postponing the Lemtrada treatment. If tuberculosis would have been triggered by Lemtrada wiping out my immune system, it may have been life-threatening.
At the time, however, it was hard not to be bitter about this, especially when I couldn’t even roll over in bed or stand up, and I didn’t know if I’d ever get better.
When my paralyzing relapse didn’t respond to multiple courses of steroid treatment, plasmapheresis was recommended. While it made all the difference, I was again unable to find other patients who had encountered the same situation. At the time, there was not much evidence on the internet about the efficacy of plasmapheresis in situations like mine. I felt lost in the dark — literally, considering my optic neuritis was still affecting my vision.
It was scary to not have anyone to talk to about it, or who could offer comfort. The medical team was wonderful, but it wasn’t the same as hearing similar stories from other patients. From the smaller procedures — and I was no stranger to medical procedures by that point — such as having a central line inserted, to the more fundamental understanding that my blood was being removed from my body, cleaned, and put back in, I faced a whirlwind of emotions.
It is important to remember that these procedures were for my own good, no matter how traumatic they were and how lonesome I felt. This is why I want to share these stories. If any comfort and understanding from my patient experience can be offered so that others won’t feel as lonely and isolated as I did, then my day will be made, which has become my personal catchphrase.
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