mistakes were made... lesions have been learned... it's time to move on - dead brains don't dance — LiveJournal

beyond the last visible dog

Jun. 28th, 2006

[perlmonger user icon]

07:50 pm - mistakes were made... lesions have been learned... it's time to move on

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]

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[ccomley user icon]


Date:June 28th, 2006 - 07:36 pm

Buggered if I know why they're being so vague. Thing about MS is, they still don't know lots of stuff. After my MRI they were 100% positive that was the problem. For some time I attended their special MS clinic to talk to the neurologist - or actaully to one of his students. Eventually it became evident to me that they were more and more surprised that I had not only nothing new to report but that the problems due to the original event were continuing to recede. Eventually they told us not to come back *unless* something actually happened.

Nearly six years later, the only new news is my eyesite is weakening, and I have reading glasses. Which is probably just because I'm 45...

Best of british, may it be a wierd one-off and never bother you in future.
[alicephilippa user icon]


Date:June 29th, 2006 - 08:22 am

Yes, I can believe that the reading glasses are due to your extreme age. :)

Or at least that's what they told a mere child like me.



Date:June 28th, 2006 - 07:59 pm

transatlantic hugs from both of us.

I search in vain for Russian Caravan tea here. Twinings abandoned it years ago, and that's the only tea worthy of the name you find here.
[ramtops user icon]


Date:June 28th, 2006 - 08:31 pm

shall I send you an emergency parcel?


Date:June 28th, 2006 - 08:56 pm

It's OK. I have a supplier of Oolong and China Black locally, but thanks!
[alicephilippa user icon]


Date:June 29th, 2006 - 08:29 am


Singularity Sky has been sitting in my 'to read' pile for the last 18 months or so, I must get round to reading RSN. Mined ewe, the 'pile' is currently running at about 120 books.

[ccomley user icon]


Date:June 29th, 2006 - 09:44 am

Suggest you make sure you also have a copy of The Iron Sunrise in your pile before you tackle Singularity Sky.

(Eagerly waiting for Mr Stross to decide What Happens Next and get it into print.)
[alicephilippa user icon]


Date:June 29th, 2006 - 12:40 pm

It's all your fault. Actually it is partly the fault of ramtops and perlmonger as well.

So, in going to get 'Iron Sunrise' I also picked up, because of the Waterstones 3 for 2 offer:
'Accelerando' and 'The Atrocity Archives' by Charlie Stross
'Nightchild' James Barclay
'Wolfskin' Juliet Marillier
'The Player of Games' Iain M. Banks

I also seem to have acquired 1/2lb of Monsooned Malabar coffee, and 1/4lb of Russian Caravan tea (why did you remind me of this?), a smoked goose breast, bacon, some aged gouda, and gouda with garlic.


[captainblue user icon]


Date:June 29th, 2006 - 11:20 am

I think that's the issue with MS - there's so much they don't know about it.

I'll be thinking of you both.
[ccomley user icon]


Date:June 30th, 2006 - 01:01 pm

Just so - along with the global reluctance of the medical profession to answer any question with "I don't know". They'd rather, it seems, give vague and unhelpful answers or plain old prevarications than say they don't know, which leaves you going away underinformed and, by and large, even more worried and confused than if they admitted they didn't know. Grr.

[captainblue user icon]


Date:June 30th, 2006 - 01:21 pm

[syllopsium user icon]


Date:June 29th, 2006 - 12:06 pm

Here's hoping it's just a temporary aberration and won't come back :)
[perlmonger user icon]


Date:June 29th, 2006 - 01:47 pm


Mind, I suppose I'm "a temporary aberration and won't come back" if observed from a slightly wider perspective :)
[aeia user icon]


Date:June 29th, 2006 - 12:34 pm

Came in from ramtops journal.

I think MS is still diffuclt to diagnose unless you have the weakness symptoms as well.

Re, getting your MRI scan.. I might be able to get it and email it (I work at the BRI), though I probably shouldn't do...
[perlmonger user icon]


Date:June 29th, 2006 - 01:45 pm

:: flutters eyelashes in a hopefully appealing manner

Please, if you can do so without getting into any crap with the Trust!
[ccomley user icon]


Date:June 30th, 2006 - 01:08 pm

On a lateral note...

I found that life insurance (et al) prices went up two or three times. Despite the fact that last I checked MS isn't actually fatal, even if you get a bad one. IF you think you'll be in a position of needing more such cover in the future, get some in now whilst you can still honestly say no, you have not been daignosed with .
[marypcb user icon]


Date:June 30th, 2006 - 08:21 pm

I do hope the aberration is temporary, idiopathic, asymptomatic and fleeting.

doctors are prone to tell you what they've been taught and what they might have found out because being trained to seek answers makes 'gosh, dunno' sound like a rude word asking for a lawsuit