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.
When plans change
1 week ago