1. I'm trying to cut down on f-lock. It's a bad habit.

2. Needed a repeat prescription for one of my migraine medicines, and since I was there anyway I asked the GP to refer me to the genetics testing people, which is something the consultant of a few weeks back suggested and I said I wanted some time to think about. I've thought, and now I'm thinking I would like to discuss the pros and cons of this with the people in charge of that sort of thing (for it is my understanding that they do not so much seize blood on the first meeting as make sure you understand what such testing involves and what the consequences are for you). So, that's in motion. And I'm in a weird compound state of being suddenly freaked out by the reminder that why yes I do indeed have a rare condition that can be tested for and might mean bad things, and being irrationally grumpy because [Big City]'s miles away, damn it.

3. There may be a new boyfriend-type-figure soon. Not right now, but soon. Possibly. Online dating site, been talking for ages, get on really well, trying to meet up and we'll see how it goes. He's not currently looking for anything serious or long-term, which suits my current situation fine. (Dr Recurring Headache is currently off angsting at a mountain or something.)

4. I love teaching first-years. I really do. I get a bit grumpy when I don't get to teach anyone else ever, but mostly, I love it absolutely to pieces. Anybody wanting to donate first-years can leave them in my office pigeonhole and I will teach them too.
I just re-read the letter from the hospital. They're sending me to the orthoptic clinic, to be seen by an orthoptist. Orthoptists deal with eye movement disorders and problems with binocular vision; I've seen many of them over the years, and they were all very nice people. So, the good news is I'll get to speak to someone who understands that my eye condition resulted in very limited eye movement and no binocular vision. The bad news is that OH MY GOD THAT IS NOT THE PROBLEM RIGHT NOW.

My eyes move fine these days, thanks to the operations done when I was a child. My lack of binocular vision has not changed in twenty-eight years. My problem is that the other day on the bus to work I was sitting with my eyes closed and my sunglasses on, and I still had to put my hand over the sunglasses because the sunlight was hurting me. My problem is that the condition which caused the eye movement problems and the binocular vision problems is neurological, and I'm worried that the migraines and the sudden inability to see in daylight might be connected to that. Eye muscles? Happy with. Optic nerves? Worried about.

So I have to wait until October to see someone who specialises in problems I don't even have. I am going to scream.
I've made another appointment to see one of the GPs at my campus surgery, about the eye condition that the last one didn't believe in. (I don't mean 'didn't believe in' as in 'had heard of but refused to accept as a legitimate medical condition', which would be another issue; I mean 'hadn't heard of and thus described as 'I doubt that's a condition in its own right - probably just the way they described your squint'' when encountered on my records.) I need to speak to a doctor about migraine stuff anyway, and since that overlaps with my concerns about my eyes (for one - any time I get stabby eye pain with migraine, it's always the same eye, and it's always the one worst-affected by the existing condition), I plan to bring that up in the same visit.

I've made a double appointment , and I plan to take along something about the eye condition I have to explain why I'm a bit concerned (and to pre-empt objections that no such condition exists). I know enough about my condition to be happy talking about it, and I've checked with my parents about what they were told when I was first diagnosed with it, so talking about the condition itself isn't troubling me. Here's what is:

Behind the cut to spare your eyes. (See what I did there?) )

I don't want to annoy the doctor (if for no other reason that then they're really reluctant to hear you out on unusual conditions you swear you've got). But, I do want to get heard. Any ideas, experiences, or advice on this one? Or at least, does anyone know a way to phrase 'I spoke to one of your colleagues about this a few weeks back, but moron wasn't listening to me' in a way that won't head things off down the wrong path from the start?

So, my tip?

Wednesday, 4 June 2008 21:00
If you have a rare congenital neuromuscular condition that doesn't really bother you much, DO NOT GOOGLE IT. EVER. You will only freak yourself out, and you do not want to hear anything about "cerebral cortical and basal ganglia misdevelopment," "structural abnormalities of the brain," "developmental delays" or "progressive" ANYTHING. Really.

However! I have learned that migraines seem to have some association with a particular one of the cranial nerves, and that the cranial nerve in question is the one that's frequently Not Quite Right with my particular condition. Also, that the same nerve is responsible for pupil dilation when exposed to light. Curious, this. Curious indeed.
My mother's suggestion for what I should've said to the GP who told me I didn't have an existing eye condition:

"I am currently wearing one contact lens. Does that seem right to you?"
I have an eye condition that somewhat hampers my ability to see stuff. The main symptom - at least, the one that affects me most - is that I don't have any stereoscopic vision, meaning that I judge distances via parallax. This isn't normally a problem - I've never had stereoscopic vision, so I have no sense of lacking anything - except when I'm dealing with the before- or after-effects of a migraine, in which case my brain just can't do all the calculations necessary, and I bump into things. (I also can't play first-person shooters if I have a migraine coming on, for what I'm guessing is the same reason. I find this curious. But anyway.)

Another symptom, though, is that I don't deal well with bright sunlight, and this one appears to be getting a lot worse. Over the past year or so it's become almost impossible to see on a sunny day sometimes, to the point where I have to walk with my head down because it's blinding to look up. I have sunglasses - dark sunglasses, because the world's often still too bright through paler ones - but, you know. It's not supposed to be getting worse. I am vaguely troubled. And I am also wondering if this is related to why I'm getting migraines now. And here we have a problem.

My eye condition is really, really rare. (It's an unusual variant of an already-rare condition; what I've got doesn't actually have a name.) The first few years of my life featured a lot of bouncing between specialists, a lot of exploratory operations, and a lot of various tentative diagnoses that turned out not to be the case at all. The surgeon who eventually did diagnose it, the man who wrote (well, edited) the book on paediatric opthalmology, had seen it once before in his career, and if it wasn't for the girl in Norway who beat me to it I'd have been the first person in the world to have the operation I had. My medical history involves a lot of guessing, is what I'm saying.

So, my mother wants me to see a specialist on this sunlight thing, on the grounds that even if they're guessing their guess will be better than mine. I'm dubious, because it seems like a hell of a lot of time, energy and hassle to go through in order to get told "I dunno - try sunglasses?" So I throw this one open to the floor. F-list - in my position, would you ask your GP to refer you to a relevant specialist, or would you stick to the sunglasses and see how things developed?



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