By March, my balance recovered, I finally had a firm grip in both my hands and my vision got better. My left eye returned to 20/20 while my right eye only returned to 20/40. I learned the damage in my right eye was likely permanent, but I only notice the blurred vision when my left eye is closed. And unless I decide to become a pirate with a fashionable eye patch, I think I’ll be okay.
I’d been off the steroids for two months before I got another brain MRI. And wouldn’t you know it – more change. The lesions that appeared on earlier MRIs, which appeared on the outer covering of my brain and were consistent with sarcoidosis, didn’t show up. But new lesions with rings around them, consistent with lesions seen in MS patients, appeared. So again – we’re at a stand still.
While there’s no diagnosis, there are options for treatment. More steroids as if I had sarcoid, daily injections as if I had MS, chemotherapy to stop the lesion activity, wait for another symptomatic episode or get another opinion. Sherren always tells us, “If your mother says she loves you, check it out.” So essentially, that’s what I’m doing. My doctors have been amazing, but I’d like to get a second opinion at another hospital before I jump into a treatment for a disease I don’t even know I have.
So for right now, that’s where the story stops. But I guess you can say it’s just on pause. I’ve even left out plenty of details (like the many sleepless nights I had, the reassuring talks with my dear friend Tom, the endless hours explaining my story to person after person, et cetera) that would otherwise make this post 10 pages long, but you get the gist of my story.
Thanks for coming along with me on my journey. I appreciate all the heartfelt emails, texts, calls and conversations I’ve had with everyone in my personal and professional life. My family, friends and TCW keep me going strong. And I couldn’t be more thankful for the love and support. Keep you posted!