Something funny to start the day! ☺️ A sign from an actual Texas restaurant that always has hilarious postings.
Don’t you love when you have something wrong and no one tells you? Saw neuro-optho for follow up yesterday and apparently I have retinal thinning in upper, outer portion of my retina. I saw a new neuro-optho because my last one left and so is this one. 😟 She said the thinning is stable and not caused by hydroxychloroquine. Said it’s very common in inflammatory disorders and likely caused by small vessel disease. So I did some research.... low and behold, retinal thinning is a pretty good marker for neuropsychiatric lupus in those without positive antibodies such as ANA/dsDNA. Since NPSLE is notoriously hard to diagnose when it is an initial and major presenting symptom, I found this paper to be amazingly interesting. Anyone ever tell any of you that you have retinal thinning? I know we all go to optho for HCQ toxicity monitoring. This finding and what it means floored me.
I still have marked bilateral nystagmus and she agreed to keep on with the recommendation of neuro dosed IVIG. Woo hoo!!!