Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum.
This week’s question is inspired by the forum topic “How do you feel about journaling? It’s a good way to keep track of your MS symptoms!” from June 7, 2018.
Recently, I ran into my daughter’s friend, who I’ve known since she was in middle school. She’s now in college. We were at the local diner where she worked, and she shared that she’d been recently diagnosed with fibromyalgia. Knowing I live with MS, she asked me how I dealt with chronic illness.
Well, that’s a big question.
“Let’s talk over coffee,” I suggested.
I’m hopeful. During our talk the next day, I was impressed with her proactive self-advocacy since her diagnosis last winter. This is a smart girl who’s no stranger to chronic illness (she also has asthma), so at least there’s the silver lining of early lived experience. She’s also a fighter, though you’d never presume it by looking at her.
I’d planned to share what worked for me in early post-diagnosis, but then she asked me, “Do you keep a symptom journal?”
Yes! It was one of the first things I did following diagnosis, during the major flare-ups and symptoms (inability to read, leg tremors, paresthesias, cognitive fog, speech issues). It finally coaxed me into getting MRIs, lumbar punctures, blood draws, evoked potential tests, and more to solve the mystery of what was wrong with me.
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