Monday 20 July 2009

I found out....

Four years in the "limboland" of no firm clinical diagnosis finally ended today in the expected anticlimax. Entirely appropriately, the news was tossed out as an afterthought and with absolutely no fanfare in the decidedly unglamorous setting of a hospital ward for outpatients, in the open seating area and in full view - and earshot - of all the other people attending the clinic.

I was actually attending today's clinic as a follow-up to the lumbar puncture I had some ten days ago, to try to understand why my head still hurt. I had no expectation that I was going to get any results: after more than a week of being unable to stand up without being completely incapacitated by a pounding headache, all I really wanted was to get my life back to normal as quickly as possible; to do all those things you usually take for granted - to run, to swim....hell, even going to work would be an improvement on lying on the bed unable to get up.

I actually started feeling better at some point on Friday evening, and this slow improvement continued over the rest of the weekend, so I was optimistic that the consultant at the clinic was going to give me the all-clear. My symptoms were caused by a lowering of the pressure in my cerebrospinal fluid as a direct result of the lumbar puncture. Apparently, it's not all that uncommon for these symptoms to last for up to two weeks after the procedure. Now they tell me. As the consultant acknowledged today, perhaps they shouldn't really downplay the impact of a lumbar puncture to their patients before they carry out the procedure. Hmmm, perhaps not. Perhaps if I'd known the possible impact it could have on me, then I wouldn't have gone on that trip down to Milton Keynes the day after the procedure, and maybe I could have spared myself that trip to A&E.... still, it's done now, and apparently it affects different people in different ways.

In some ways, my visit to the clinic today was a waste of time: we arrived on time and then waited nearly an hour before the consultant turned up*, saw I was sitting upright and not lying flat out, and then sent me home after a short chat and without bothering to examine me. What did I do for a living? Hmm. Would work allow me to perhaps work the rest of the week as half days? I was a runner? Hmm. I could start running half a mile at a time, building up over time and making absolutely sure that it didn't have a negative impact on me. Oh, and the results of your lumbar puncture, by the way, are entirely consistent with what we would expect from multiple sclerosis. Look after yourself. Goodbye.

You have to laugh really. Maybe I should be annoyed at the way the news was delivered in such an offhand manner after so many years of uncertainty. Shouldn't it be a bigger deal than that? When you're told once and for all that you are definitely suffering from an incurable and degenerative neurological condition, shouldn't they sit you down in a private room and at least offer you a cup of tea or something? A biscuit, perhaps, or would that be pushing it too far? Surely to goodness it's not something you should tell anyone offhand, when they're surrounded by strangers in an outpatients' waiting room? I could be annoyed by that, I suppose, but what would be the point? It's hardly new news, is it? I was de facto diagnosed in March this year, and in the eyes of the NHS and for the purposes of receiving treatment, I have officially been suffering from MS since then. Why the hell should I care how and where I get told that now?

If I wanted to be annoyed about something, I suppose I could choose be irritated that I have been through a painful diagnostic procedure, one that has literally knocked me off my feet for more than a week, only to be told something that I already knew..... but actually I didn't really know. Not for sure, anyway. A 'de facto' diagnosis is not necessarily the same thing as an actual diagnosis, is it? It's a moot point, I suppose, but I wanted to get as much clarity as I could get about what I was or was not suffering from.

....and now I have it.

So I have spent my afternoon doing practical things like declaring my condition to the DVLA and submitting a critical illness insurance claim. Tomorrow, I will inject myself in the thigh with a dose of Avonex in an attempt to arrest the progression of my condition. I've been doing this every week for the last two months or so, of course, but now I will do it knowing that I am not 'de facto' suffering from anything. I have MS and it's time to move on with the rest of my life.... starting, tomorrow, with work (well, I've already done the half mile run, but you were expecting me to do that first, right?)


* The consultant, incidentally, was astonishingly young looking. Perhaps, as with dentists and policemen, you know you're getting old when even your senior neurological consultant in the hospital is probably younger than you.....


  1. anything you need or want, just let me know. if it's dated metal MP3's, they are my speciality.. M

  2. or any bad 80's punk or alternative. Good luck ST, I mean it.

  3. It all sounds nightmarish. At least you finally have that confirmation you've been waiting for. I'm glad you're well enough to get on your feet again, but I'm guessing not half as glad as you are!

  4. Yes there should have been biscuits- at the very least a cup of tea, a private room and a convincing pretense that the consultant thought of you as a person with feelings.

    I know the world's health systems are over-loaded and underfunded and yet I don't see that as any excuse for running hospitals/clinics like factories.

    Sending you a big hug


  5. Definitely biscuits. Testimony perhaps to how busy everyone is, or maybe there's an element of seeing people as part of a process when you're dealing with this sort of situation every day. Either way, proper bobbins. Glad to hear you're back on your feet, and keeping on running.

  6. I didn't get a biscuit either when I was diagnosed, but I was offered a Russian social worker, but she irritated me as I felt all her attempted sincerity was fake.

  7. Epic biscuit fail, as I'm sure the youth would put it. I hope you rectified it with the biscuit of your choice once you got home.

    You're right to be miffed but I know you'll dust yourself off and launch straight back into the fray, because you're Roboswiss and you can handle anything. It's a hitch, a glitch in the system. You'll learn to work round it. And you got stuck into the treatment fast so that could make a real difference.

    A nice hug and one of those huge barrels full of assorted biscuitry. You pick the sort. Mine's a shortbread finger. Stay cheerful, popkin.