I had an MRI scan of my brain and cervical spinal cord at the beginning of September. I wrote about it before, but to cut a long story short, this was my first scan since 2005 and my neurologist wanted to see if there had been any progression in my multiple sclerosis. I had my first symptoms in 2005 and was formally diagnosed after a lumbar puncture in 2009, but my disease progression seems to be unusually slow – which is great news – and there was some talk that I might even be able to come off my weekly injections.
Needless to say, I’ve been anticipating the results ever since. How can it not be interesting to get a snapshot of what’s happening inside your own brain?
The NHS being the NHS, nearly two months later and I haven’t had anything back yet. I rang the MS nurses to see if they could chivvy something along… but the very fact that they have a message on their answering machine wearily telling you who to contact if you are waiting for MRI results tells you that this sort of a wait isn’t at all unusual. I chased my neurologist’s secretary, as instructed, but I took the opportunity of a visit to my GP this morning to ask if he had received any results yet. He hadn’t got a letter from the neurologist, but thanks to the wonder of the NHS "spine", he was able to connect to the consultant’s report on my NHS record directly and see what it said.
The report is mostly impenetrable, of course… but the long and the short of it was that I clearly have a number of distinct lesions in various parts of my brain and in my spinal cord. The reason they haven’t written to me, I think, is that they say in the report that they're looking for the comparison scan so they can measure disease progression, but they obviously haven’t been able to find my 2005 scans from a different hospital (they can have my copies, if they want). What I remember from those original scans is that they could only find evidence of one lesion (or sclerosis) – in my neck – which was causing my initial symptoms. The reason it took so long for me to receive a formal diagnosis was that, in order to definitively say that I had MS, the neurologists obviously needed to find more than one sclerosis.... they don't just hand out life changing diagnoses like this willy-nilly, you know...and the scan just wasn't clear enough.
Well, it sounds like this isn’t an issue any more.
I was hoping that my relative lack of disease progression would be accompanied by a clear MRI scan.
So, how does this make me feel? Well, rationally, it doesn’t change anything: I remain fit enough and capable enough to run fairly long distances, and the discovery of new lesions doesn’t in itself change that one little bit. I say here a lot that I know how lucky I am; how relatively unaffected by MS I am. I know that sounds excessively stoical, but it’s true. However, I also know that my symptoms affect me more heavily now than they did in 2005. My MS doesn’t seem to be following a classic relapsing/remitting profile, but that doesn’t mean that it isn’t progressing at all.
Putting aside all rationality - something that I find difficult at the best of times - how does this affect me emotionally? Well, truth be told, there’s a little part of me that has held onto the fact that I’m an unusual case and that my MS is relatively benign (my neurologist even occasionally calls it Benign, with a capital “b”). I liked to imagine that perhaps things would never get any worse, even when I could see that my symptoms were actually slowly getting worse, at least there was nothing new. The fact that I never really experienced any new symptoms beyond those I experienced in the summer of 2005, only variations around a theme, allowed me to imagine everything was tickety-boo. Benign.
Sadly, I now have a much clearer idea of what's happening inside my skull.
Although the discovery of new lesions doesn’t materially change the way I feel, it does rather take the comforting thought of 'no progression' away from me.
I want choices and I want them now
20 hours ago