I have a neurology appointment every 6 months. It’s nice to check in with the team more regularly as previously I only saw my consultant once a year in the UK. I actually never met him at all as I only ever saw one of the team of doctors, who were regularly on rotation so I never saw the same one twice. The continuity I have with the team in St. James’ hospital is much better. I usually see one of the current doctors first who notes any changes and carries out an examination. They then report to my consultant and she comes in to run through the plan and talk me through things.
This post isn’t about complaining about consultants and neurology services, though I’m sure there are lots of people out there with valid grievances, I guess I’ve been lucky. Although I will add here that it is very difficult for the team to monitor neurology patients or make recommendations on medication without regular MRI scans to check disease progression. Current waiting times are crazy and that’s just to be notified that you have an appointment never mind the actual scan.
I had a neurology appointment in last week. My consultant was away so I saw her registrar, whom I hadn’t met before. He was really nice and very thorough and explained things well to me and my husband.
I suppose I’m just wondering what do I actually expect from neurology appointments? My MS is not dramatic, rather a slow creeping version that means things get a little more difficult every day until 6 months later I need more mobility aids than before! My scans have been stable for quite some time so what are the doctors supposed to do with me? From their point of view the drug is working to control inflammation as there is nothing new on the scan. I’m reporting progression but with no evidence on the scan there is no justification for a medication change at this point. All medications come with their side effects and complications so I’m not terribly eager to move to the next level anyway, but what was I hoping he’d say?
I didn’t hear anything that I didn’t already know. MS sucks and shit happens, it wasn’t put to me that way but we all know that’s the truth of the matter. The doctor was very sympathetic and kind but I’m already taking medication for most of my symptoms and he explained why further intervention or increased dosages might not be helpful and could actually cause problems so I’m happy with the decision to leave things as they are. However I still came home feeling a bit flat and sad. The hard reality is that I’m the expert in my MS and 12 years in I pretty much know all there is to know about what I should be doing. (Still open and hoping for more though)
SHOULD BE DOING! I’ve totally fallen off the wagon! I’ve done the radically healthy diet thing and was a fanatic about my home physio program. It’s just after 12 years I’ve lost my mojo and I’m struggling to find the motivation to go through all that again when there are no guarantees it will make any difference. As I said shit happens and I like cake 😉
Look, I’ve done it all before and I’ll give it a go again to see what happens. I suppose there’s always the hope when you visit the neurologist that you’ll talk about your symptoms and they’ll just say “oh there’s a new tablet for that, it’s guaranteed to work with no side effects”. That says it all really, a possibly progressive, incurable disease coupled with unreasonable expectations (hopes or wishes really, I don’t expect anything to be resolved) can only lead to an unsatisfactory appointment.
It must really suck to be a neurologist and know that at some point you will run out of drugs or suggestions for some of your patients. I suppose this rant is about me being frustrated but recognising it must be frustrating for the care team too. So thanks guys, I do appreciate you 🙂