Mo and I are taking a break from the conference before more afternoon sessions and a 5:30 focus group.
We are at the pool, hard cider and Miami Vice (one of the most delicious frozen poolside drinks ever conceived) in hand, discussing which sessions so far have been the most insightful.
There’s a Czech Republic doc here at the conference (we’ll look up his name later because it’s long and unpronouncible) who was talking about the European Myositis Registry (click here):
Me: “You should get on that!”
Mo: “Yeah, but a doctor has to get you on it. I don’t know if Westerman (Mo’s Rheumy) would do it.”
Me: “You are Irish, I’m sure he would. What would he care?”
Mo: “Yeah, looking back on it everything probably started in the early 90’s when I was back there.”
Me: “What do you mean?”
Mo: “When I took time off from work in Ireland. They diagnosed me with chronic fatigue syndrome but it probably was the start of the Myositis. I was off work for a couple months, they put me on prednisone (the steroid he’s on right now, again)”
Mo: “The Brothers (Mo’s three brothers Kieran, Dermot, Brendan) asked me if I was going through the same thing as back then when they came out for the wedding but I said nah. I mean, I didn’t have the rash stuff or anything back then…(FYI he doesn’t have a rash this time either!)”
Me: “Are you kidding me with this?! How am I just hearing about this? You never thought to tell me before?”
Seriously. I am gob smacked. Mo left out kinda vital information. Not just to me, but his doctors too. He just never put two and two together until now. Or he never admitted it to me or himself. They say hindsight is 20-20, but damn! that hindsight is awfully useful.
Maybe his being indoors and in Ireland (notoriously NOT a sunny island) saved his skin from showing the tell-tale heliotropic rash. But as we know now, the rash isn’t always present anyway! Maybe the Irish docs in the 90’s wouldn’t have known what the rash looked like anyway (Myositis is rare and there’s not a huge population to draw experience from like here in the U.S.)
Of course it’s all conjecture. We don’t know what would or would’ve happened. But it does change my mind that statins were to blame for his autoimmune disease. Or not. I don’t know.
I don’t know anything anymore!
My mind is blown. *PSHOOSH*!!!