dead brains don't dance

Yesterday I had my last scheduled test: electrodiagnosis of the state of the Jordan neural circuitry in an eyesight style.

I went in on the bus, leaving ramtops at home to man the phones, and was dealt with in the prompt, efficient and friendly way I’ve come to expect from the Eye Hospital; greeted by name by the receptionist in the Electrophysiology department as I arrived, and not even having time to sit down before the tech arrived to deal with me.

Seven electrodes: two by my eyes; two further round my head; three at the back over my visual cortex. Nine tests, all involving a reversing checkerboard pattern on a 22" Iiyama whilst looking in a relaxed but unblinking way at a red square in the middle. Full screen both eyes; full screen right, then left eye; left and right half screen for each eye; full screen small checkerboard for each eye. That was it, and I guess I’ll hear from Dr Ormerod at some point after he gets the results delivered.

I’d be interested in the results myself: they might help clarify how much of what I see through my right eye is down to actual recovery in my optic nerve dielectric, and how much post-processing and interpolation in my brain.

Well, the neurologist seemed a decent enough chap; at least he didn’t pretend to any knowledge, let alone certainties, that he didn’t have. His general approach was that my Event most likely was MS-related, but that it could also have another cause and could they do some more tests on me?

I turned down the lumbar puncture he offered - there’s no way I’m having one of those unless it’s absolutely necessary. He wasn’t pushing it in any case; it was more in case I was looking for potentially greater certainty of whatever nerve related horrors that might turn up. As ramtops pointed out, even if I had the thing and it turned out to up my probability-of-MS from 50ish% to, whatever, 80%, there’s still fuck all they can do about it.

I consented to the other tests: circulatory tests in my carotid arteries (it seems that stenosis thereabouts could be an alternative cause) and some flashing lights / optic nerve datatap thang to get more data on the state of my myelin sheaths (both to be dealt with at BRI when they fit me in for an appointment), and bloods, to be done straight away by a nurse. Five vials full he took, whilst chatting to me about web development and Tony Hancock, for cholesterol, diabetes, thyroid and Other Things I cannot recall. ramtops did the Hancock joke too when I emerged.

So, more waiting: the doctor said he’d write as each set of results came in, and then call me in for yet another appointment when they’re all in his paws. This will be some time well into 2007 by the probabilities, so I’ll just carry on carrying on largely as though nothing had happened in the mean time.

We’ve just returned from a round trip to Southville (lunch, veg, green tea, G&B choccie & almond), Sainsbury (diesel, marzipan choccie bar) and Hill Road, Clevedon (Montgomery cheddar, borlotti beans, chili choccie). You may notice a pattern developing in there somewhere.

Also, I drove the entire journey; the first time I’ve driven (aside from parking a couple of times) since my optic nerve myalgic sheath went sideways. I was very stressed+nervous at first, but I seem to have got away with it without even making ramtops scream (much). However, I’ve ended up with toe cramp in my right foot which, I suspect, is down to being a lot more tensed up than I actually realised while we were out...

Well, that was the first evidence of chaotic incompetence in the NHS in my brief series of encounters therewith.

After a client meeting in the morning[1] and a trip to Ikeal[2], we went in to the Eye Hospital for my appointment. I was seen pretty much straight away to have a quick vision check; the nurse said she would find my MRI results, bung ‘em in the back of my file and pass that on to whoever was going to see me.

So, we sat and waited for a bit. After that bit, the doctor appeared, with a senior nurse of some description (I don’t do uniform recognition) only to inform us that, nearly two weeks after the scan, the radiologist at BRI hadn’t signed the damned thing off. And had also buggered off out of the hospital.

Since the MRI results were the entire reason I was at the Eye Hospital at all, this was a little vexing. The doctor invited us in for a chat anyhow, to talk about what the results, when they finally materialised, would signify. Or not. It seems that current research suggests that a positive result would predict an approximately 50% chance of an MS episode of some sort in the next 10 years; a negative result (from my base point) would indicate a 25-28% chance of the same - not what I’d call a particularly reliable indicator, then.

While we were talking, the nurse appeared: it seems the errant radiologist had been tracked down and, with luck, we’d get the results in a half hour or so. We wandered off to sample the delights of the newly reconstructed bus station (can you feel the visceral excitement of life in the heart of Bristol here?). After another short wait on our return, the doctor called us back in: yes, I do have lesions; these either being indicative of MS or possibly maybe not.

He’s referred me for an appointment with a neurologist, for whatever good that might do, but that isn’t likely to materialise for months. I reckon I’ll just pootle along as before: there’s not really a lot of point in agonising over something that still has a 50% chance of never even happening and, in any case, the only thing I’m aware of that increases the odds of an episode, should I actually have MS, is stress. So worry is contraindicated, I think.

We consoled ourself with a brief book fix in Waterstones (3 for 2 is a dangerous thing[3]), and Whittards for some Russian Caravan tea[4] and succeeded in hitting the rush hour at its height. Took us the best part of an hour for ramtops to drive the six miles home; people do this every day... Mad.

[1] we were sacked. Actually, that’s unfair; they’re spending the year migrating their web presence to an offshoot of their new CRM system - we’ll actually be doing a fair bit of work for them to help manage and stage that migration.

[2] rugs for the hallways; rather fine bright scarlet rugs with yellow stripes. Some bed linen. A corner shelf unit. Nightlights. And ramtops found me a little bottle of Elch Blut, complete with a MOOOOOSE!!!! head top.

[3] a bit of a Neil Gaiman fest: Anansi Boys, Stardust and Smoke and Mirrors. Also Singularity Sky, Sophia McDougall’s Romanitas which might be crap but looks quite fun, and A Short History of Tractors in Ukrainian.

[4] don’t like it much on its own, but mixed 50/50 with Lapsang Souchong it’s wonderful.

[ETA minor fixen as pointed out to me by ramtops - an errant apostrophe(’) amongst them; I hadn’t realised I was that debilitated]

Third visit to the Eye Hospital this afternoon, and the first actual scheduled appointment. Nothing new, really: they did a field test, the results of which showed that my right eyesight is still as bad as I feared, not as recovered as I’d hoped. I guess I’m doing a lot of extra post-processing ATM, which would explain the low framerate and interspersed random photoshop filter effects that I’m seeing.

The antipodean chap I saw after the tests didn’t really say anything new; not a lot they can say or do until after the MRI scan on Friday week provides some sort of data. He seems to be a β-interferon fan for early-stage MS, if that’s what I actually have, but beyond saying that it’s an expensive drug (no sher!), he didn’t offer any odds on actually getting it on the NHS, even should I have the disease and then choose to pursue that option. All a bit premature, really.

So. Another positive experience overall (in on time, out early, no crap from or with anyone I dealt with); I emerged with another appointment being processed for three weeks hence. We’ll see how the radiology dept. at BRI proper compares next week.

In spite of the progression of possible causes I’ve been presented with, I’m inclined to believe the last. This is because it matches my own self-diagnosis back from when my symptoms started getting worse last weekend: optic nerve damage. That’s what I was experiencing felt (and feels) like, from the way my visual perception is operating; like data loss or noise post-transducer, not distortion or filtering inside my eyeball itself. I even Gooled for it, without success as I didn’t then know what terms to actually search for.

I should trust myself more :)