In late 2012, I was starting to think I was losing my mind. Memory issues, problems understanding spoken language, difficulty organizing and getting things done (when, in my professional life, I often did the work of two people because of the efficiency measures I’d developed), difficulty drawing (after 20 years as a graphic designer), all were losses I couldn’t explain. A neuropsychology exam concluded it was “conversion disorder” (i.e., psychosomatic) caused by stress, and an MRI showed non-specific lesions in the white matter of my frontal lobes, but even when I asked, “Is it MS?” I was told it wasn’t. The problems got worse over the intervening years, and there are now several lesions, in the “right” places. I was diagnosed in October 2017.
I’m having a difficult time accepting this, that I’m going to be limited (maybe?) in what I can do. Fatigue was my number one problem when I was diagnosed, but now, muscle spasms in my quads are increasingly limiting my mobility. If I keep deteriorating as I have been in the year since I was diagnosed, I’ll be in a wheelchair by this time next year. I was athletic and active my whole life, and sitting still and resting, which I need to do, is frustrating.
I’m trying to figure out my “new normal,” but I really don’t want to believe I don’t still have my “old normal.” Plus, “normal” is changing so fast, it’s hard to adjust.
I had to stop attending graduate school (which I needed to attend to get my counseling license in IL) because of the cognitive symptoms, so I got cognitive rehab treatment and applied to go back, but was denied. I guess they didn’t believe that all my messing up was due to the MS, and I was just incompetent, despite the workarounds I developed in rehab. And just like that, my career was over.
I hope to figure out how to live with this, to at least work around it. But the not-knowing how much it’s going to affect me in the future is, I think, the hardest part. I’ve had a lot of ups and downs in my life, and I’ve been pretty good at rolling with the changes. I hope I can figure out how to roll with this. My plan at the moment is to write a blog and advocate for recognition of cognitive symptoms in early diagnosis. I think the current criteria don’t make sense, given what we now know about the disease.