Week 37

Last week I mentioned oxybutynin and its possible effects on cognition. My GP said the dose I take won't affect it, so I've asked my consultant, but they haven't got back to me, so I'm none the wiser and still on the older anticholinergic. I've got a clinic appointment in June, so I'll ask in person the if I haven't heard by then. 

I'm also going to ask about my MRI scan results, and if there are any visible signs of cerebral (brain) atrophy on them. Atrophy is when the brain shrinks, and I know what you're thinking - actually, you're probably thinking, why does he always tell me he knows what I'm thinking? Ha! And now I've forgotten what I was actually going to say. It'll come back to me in a minute and I'll add my point and then I shall delete this nonsense. 

Brain atrophy. Many neurological illnesses cause the brain to shrink and MS is one of them. I remember what I thought I knew what you were thinking. You were assuming my brain must've shrunk considerably. Worth the wait? I don't think so either. 

I am curious to know how my scans shape up compared to the general public. My MS has progressed quickly and I wonder if it has had an effect with tissue wastage. When that damage is done, it's done, irreversible. I reckon that's a sign you've crossed over the threshold from relapsing remitting MS into secondary progressive MS. For the record, I believe that diagnosis  is due any day now. I've been expecting to hear it for 2 or 3 years. I'm not bothered, it's just a word at the end of the day. We are taken out of one 'pigeon hole' and put in another, that's all. 

This is where I contradict myself over what I've just said because there is a concern that I have with the secondary progressive tag, and that is about my medication. Will they withdraw it if I am deemed progressive? I honestly don't know the answer to that. I mean it definitely is helping. Of that I have no doubt, but will the powers that be decide that it is no longer cost effective giving Gilenya to somebody secondary progressive? Am I clogging up the system? Is my being inside said system delaying another patient's inclusion? I will do my upmost to stay on an effective drug for as long as possible, or am I being selfish? 

Or what about the theory that when you stop taking an immunosuppressant (Tysabri, Gilenya, Novatrone,  etc), it kickstarts your immune system, thus making it more aggressive than it was before you started taking the treatment? The relapse rate of MSers coming off, say Tysabri to start a new disease modifying therapy is higher than average. That's exactly what happened to me.Bit of food for thought for you. 

Maybe I shouldn't instigate this issue when I see my neuro next month...

Happy Friday,

Dan