Thursday 22 October 2009

where is my mind?

"So was there anything else?"

I was in my regular six-monthly session with my MS Nurse. If you have multiple sclerosis, then the network of MS Nurses - that suddenly seems to appear as you are diagnosed - becomes the absolute centre of your medical world and of your contact with the NHS. Whatever you need, whether that's an appointment, advice, treatment or simply a shoulder to cry on, the MS Nurses are just a phonecall away. Where consultant neurologists and other doctors sometimes seem to come from another planet where empathy and human understanding are in short supply, the MS Nurses also provide a reassuringly human face to the monolith that is the National Health Service.

Today's appointment was a simple follow-up to make sure that I was okay and that I was coping alright with the injections that I have now been doing for six months. My doctors have thus far been extremely tight-lipped in front of me about my case and they seem to be absolutely determined to avoid using the phrase "multiple sclerosis" to label my condition, preferring instead to hide behind "demyelinating disease". To date, the only doctor to use "MS" when talking about my condition was the guy who saw me after the lumbar puncture and who casually gave me my results in a waiting room of patients (the nurse said she'd be having a word with him about that...). All of my neurologists have steadfastly and carefully stayed away from it, to the extent that they rarely actually give me the results of the tests that I have done at all, preferring to generalise. As a result, I don't actually know what type of MS I have. Relapsing-remitting is the most common, and even in the absence of obvious relapses, I'm assuming it's that, but for all I know it could also be primary-progressive or something else.

Today's session with my MS Nurse was priceless then, if only because it gave me a chance to have a look at the letters the doctors have been sending each other about my condition: my blood tests show that my liver function has been okay since I started on the beta-interferon but my haemoglobin levels have been falling and I'm now slightly anaemic. My evoked potentials test showed mainly that they don't have "normal" readings for a man of my height, but that the tests showed a slower passage of nerve signals up one leg than up another, indicating demyelination. The lumbar puncture showed oligoclonal banding in the proteins also indicating demyelination. A letter from one consultant to my GP showed that I have been classified as having relapsing-remitting MS..... all good, useful information that no one thought fit to tell me about until I saw my MS Nurse.

So apart from the blurring in my right eye, the general ups-and-downs of the numbness and tingling in my body and the weakness in my arms and shoulders, was there anything else I wanted to mention to the nurse?

Well... as it happens, yes there was. I wasn't really sure how to say this, and I wasn't sure whether this was all in my head or not, so in the end I just came right out with it: I've started to notice, or I think I've started to notice, some problems with my memory. I have an excellent memory, in the main, but just recently I have found it oddly difficult to recall one or two things: people's names, a system that I used to work with. Nothing much, you might think, and feasibly things I might just have forgotten. But then again, it is unusual for me, and not a little disconcerting too.... and it's one of the symptoms of multiple sclerosis. I have so far been able to handle all of the physical symptoms that this condition has managed to throw at me. I know I haven't been all that badly affected yet, relatively speaking, but what I've had, I've coped with. Physical symptoms are only that, aren't they? They only affect your body. Sure, I'd feel pretty down if I lost the ability to run, never mind the ability to walk, but as long as you have all your marbles, then at least you have something. I pride myself on my intellect, and the idea that I might be beginning to lose some of those marbles I prize so highly, is a very, very frightening thought.

So I mentioned it.

And now I am going to be seeing a neuropsychologist.

As C. was there too today, I imagine that I'm also going to be getting some kind of brain training game thing for Christmas. I've managed to happily avoid sudoku all of my life so far, let's hope that I manage to avoid it for a bit longer, eh?


  1. I'm glad to hear you got a little information about what's going on. Have you thought of asking them to tell you> (I'm sure you have) I've found the most direct way to discover something from my doctors is to ask them outright. There was an interesting piece about it on NPR the other day, about preventing mis-treatment by being really forthright with your doctors. I'm sure you are though.

    Try crossword puzzles. I hate soduku but I've found that crosswords both challenge my memory and my critical thinking skills...

    All my best, dear.

  2. Well, some people like sudoku. Why don't you try it again ? Everyone needs a second chance :)