About Me

  • Gender Female
  • Age N/A
  • Relationship Domestic Partners / Common Law

My Story 0 Appreciate this

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.

Interests

Living Well with MS Emotional support, Healthy living, Mobility and accessibility
Getting Involved Advocacy
Research Research news

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