My son loses vision in one eye frequently throughout the day. All his eye exams, including the retinal test, comes back negative. Although the neuroophthalmologist said the area where his nerves come together has a smaller opening so he feels this is pinching on the nerves. I feel that yes, this may be contributing, but this came on suddenly (about years ago now, when he was about 16) which tells me that it may be something more? I was just diagnosed with EDS – Classic and Hypermobility. I am also sure (still working toward getting to docs) that I have POTS and Mastocytosis (or MCAD). My son exhibits many signs of EDS but not POTS or Masto. Does it seem like there are eye issues with EDS? Could this be what’s causing his issue? He’s learned to live with it, and that was the docs suggestion, instead of pursuing it further (I think he didn’t want to admit he was stumped…he was one of THOSE). Are there any other tests I should have him go through and which kind of doc would do them? He’s had MRI’s in the past for sinus issues (nosebleeds), migraines, and narcolepsy (all of which he has), but all tests always come back negative. I appreciate everyone’s ideas/thoughts on this. Maybe we’ll touch on something that I can bring to my docs. Thanks!
Hi samiamisme, This is a tough one. I agree with you that something isn’t right, and as you’re thinking, if it came on a year ago, something is getting missed. If he has narcolepsy and migraines, I DO wonder about hydrocephalus (it can be worse on one side) and mast cells (degranulation can contribute to migraines). Something is going on neurologically, don’t you think? I can’t tell you how many of us have MRI’s that were called “normal” or “FINE”, but they were anything but normal or “FINE”. I like to look at those myself. If your son has some external communicating hydrocephalus, it usually isn’t reported (or if seen it is often called “brain atrophy”). Eeks. I have spoken with one other patient whose son had narcolepsy and cataplexy, and it was secondary to hydrocephalus that was missed. OH – Do you have his head circumferences for approximately the first 15 months of his life?! That may tell you what you need to know! I’m happy to graph those out for you, if you do. Gosh, I hope that is what it is, because it is so easily treated, and may prevent POTS if taken care of early. Can you let me know? And if all else fails, another opinion from a neurologist may be in order. 🙂 Diana