Tuesday 3 October 2006

Strung out in heaven's high

I left work early this afternoon to wander through the vast and echoing halls of the Queens Medical Centre in Nottingham. It felt a touch like I was a character from a Franz Kafka novel as C. and I wandered hopelessly around in circles in this enormous, impersonal labyrinth, but in fact we were simply looking for the office of my new neurologist (for the last installment of this sorry saga, try here).

I think seeing actual live patients is something of a sideline for this guy, as he is a professor and heads up the neuroscience department at the medical school here, but he’s a diagnostic specialist, and I’d been referred to him by my regular neurologist to see if he could decide once and for all what was wrong with me.

In a way, I suppose he did.

Here’s what I have learnt: I do not have multiple sclerosis. This much is clearly good news, but unfortunately it’s a far from definitive or final diagnosis. I have transverse myelitis. For some reason, my immune system has attacked the protective sheath around my spinal cord and, at one spot around my neck, has damaged it. This damage is affecting the flow of signals to and from my brain and explains why I am feeling symptoms all over my body. Unfortunately it is not a case of saying that I have transverse myelitis and not multiple sclerosis. The clinical definition of MS is simply that of having more than one patch of inflammation on your spinal cord or in your brain. I only have the one (as well as a few indistinct and inconclusive markers in my brain), ergo I cannot clinically be said to have MS. All it would take for me to have MS is to develop another patch of inflammation somewhere in my central nervous system.

So I don’t have MS. The professor was clearly looking for MS specifically, and once he had decided that I didn’t have it, he almost lost interest in me. If I did have MS then he would be able to look at starting me on various treatments – none of which offer a cure, but which look to delay the onset of the disease and reduce the chance of the next attack by around 50%. I don’t have MS, so there’s nothing he can do. I don’t qualify for treatment, and it’s a case of going home and trying to forget about the symptoms that I do have and the sword of Damocles of the possibility of another attack hanging over my head. He pretty much told me to give him a call if and when I had my next attack.

My dad’s a doctor, and he reckons this is really good news. He thought that perhaps I was going to be told I had some nasty, quick developing strain of MS and he therefore considers this to be something of a result.

I’m a little more ambivalent about it. I don’t want to be told I have MS – of course I don’t – but I am left exactly where I was when I walked in to the hospital: with symptoms that have been slowly worsening over the course of the last 14 months, and with no real idea if it is ever going to get any better, or if it is going to ultimately turn out to be the first symptom of something else.

So we wait.

In an attempt not to stew on this, I’m off to the pub.


  1. I really sorry mate. I can't even begin to imagine what it's like. I think you're doing the best by having your appointments but still doing all the stuff you like i.e footy and the pub.

    Some people would've just stayed indoors moaning and feeling sorry for themselves.

  2. Yup, the pub seems a good plan.
    For what it's worth, I'm glad it's not MS, mate.

  3. How incredibly frustrating. I always love the here's-what-you-have-but-we-don't-have-a-treatment diagnoses. Always so reassuring!

    Hang in there!

  4. Doctors have a knack of doing that don't they? I could sense the disappointment when I was told that (if you'll pardon the overshare) 'When the walls of the bowel are as red as yours, it either means that you've got cancer or a very healthy bowel. Turns out that yours is very healthy.'

    Seemingly like your doctor, he couldn't resist ending the conversation with 'but if you get the same symptoms again, book an appointment immediately.'

    Must be a perk of the job I suppose. Keep your chin up.

  5. Well said, Flash, on both counts.

    All the best mate.

  6. I'm glad it's not MS, but I'm sorry to hear that there's nothing more to be done now. This has been so difficult for you. As others have said, it must be so frustrating. :0(

  7. Glad to hear you don't have MS but... damn.

    I remember when I was going through my medical probs and every time I was told "we can't find anything wrong" it killed me. You just feel helpless.

    Enjoy the pub.

  8. Sorry to hear you're no further on with a conclusive diagnosis, but glad that the news hasn't been all bad. And given your dad's a doctor and both dads and doctors ostensibly know best, surely that's a good thing.

  9. I'm going to have a drink for you too.

    Glad the news isn't terrible, wish the news was better.


  10. Yay for the not badness of the news. At least that's a little reassuring. Don't dwell on the 'what if' part, carry on as you are. Aces.

  11. Hell, I'm going out tonight to raise my glass to you in Chicago. I guess that I would take away from it that your father the doctor is happy, then we should be too. I realize the frustration must be killing you, but hang in there. We are thinking about you world wide. I hope that counts for something.

  12. I am keeping my fingers tightly crossed for you and hoping for the best. In the meanwhile, enjoy the pub.

  13. Yeah... I understand your ambivalence. I'd also understand if you felt a teensy bit angry, actually.

    It's a bit like those people who're poor enough to have difficulties, but not so shit poor that they manage to qualify for all the benefits and grants and schemes and stuff.

    You just slip through the net, innit? What a total bastard.

  14. Hmmm... So the only reason you haven't got MS is because you only have one patch of damage?

    Can't you try and get the medication via another route? Any thing that might reduce the likelihood of you getting that second MS qualifying spot of damage?

    Generally I'm not a big fan of taking drugs unless you have to but I'd be less of a fan of having more damage done to CNS. Do they use immuno-suppressants.