Monday 16 March 2009

I feel like they're talking in a language I don't speak....

I received a letter from my neurologist today. At first glance, it looked as though it was written in English. I really should have known better, and a closer look revealed the magnitude of my mistake:

"I saw [ST] in a follow up about two years after he was last seen by me. In the meantime, he has noticed his symptoms are more prominent and he has had a few events that could qualify as relapses, in particular, an episode in which he fell over, he has stumbled a few times before....he has paraesthesia in the hands and numbness in the feet. He has a reverse Uhthoff's phenomenon and that the cold tends to accentuate the symptoms....his EDSS is between 2.5 and 3.

"I think we are dealing with more than random fluctuations in the old established symptoms and I think we are dealing with clear cut, albeit mild, relapses. This would in principle, therefore, fulfill criteria for dissemination in time and in order to get a better idea about dissemination in space, we obtain a repeat MRI scan.

"Regardless of that, he does fulfill the ABN criteria for disease modifying treatment despite the fact that the previous demyelinating pathology is related to the spinal cord only. We will therefore put him in contact with our MS Nurses for a discussion about available disease modifying treatments and we will give him an appointment in the Disease Modifying Drugs Clinic....."


That clears that up then, eh?

To be fair to him, given that it's actually a letter to my GP, my dad (who is a doctor and asked to be kept informed), and the MS clinic people at the hospital, then perhaps I should forgive the use of the medical jargon. After all, I'm only the patient, so I've been copied in as a courtesy. Still, I'm not altogether sure what I'm supposed to do with this information, as it doesn't really tell me anything at all. Certainly little that I can understand (reverse Uhtoff's Phenomenon you say? An EDSS score of between 2.5 and 3? Hmmmm. Interesting).

I know he's waiting to see the results of the scan I'm having on Friday, and I know that I'm a lot less in limboland than I was a week ago, but still..... it's not exactly crystal clear, is it? Perhaps it never will be.

I've actually been feeling the symptoms a lot more heavily since I saw the neurologist last week, but I'm fairly convinced that it's my brain playing tricks on me and not anything new. I don't know why this would be the case. Perhaps I was in denial before; perhaps there's a part of me that has heard the diagnosis and wants to give in to it. Whatever, I'm nothing if not stubborn and it's going to take more than this to get to me. I was tired at work today, and my left shoulder was really troubling me, to the extent that I actually found typing uncomfortable. So what did I do when I got home? I went out running.

It might sound counter-intuitive, but I find that the best cure for this fatigue is exercise. It's getting physically harder to go out running, it's true, but - now more than ever - I really cherish the feeling of freedom that it gives me. I'll not give that up without a fight.

Besides, I've got a lycra fetish and I'd hate to get all dressed up with nowhere to go.


  1. I'm just catching up with things after being away, and am sorry to hear your news. I really do admire your positivity - keep on keeping on.

  2. Could your father explain those terms to you?

    You're handling this amazingly well, and agree with what Cat wrote. Hang in there.