Hi Landgirl,
This is really a tough one!
No, I don’t think you’re “asking too much”, and, as a diagnosed person, could insist on regular, routine neuro appointments.
However, on the other hand, I’m not sure how much you’d get out of them.
I’m coming up to the five-year anniversary of my diagnosis. I was diagnosed in my mid-forties, but feel I’ve had MS much longer.
Not as long as 40 years, perhaps, although sometimes it occurs to me not all was well in childhood, so who knows? Sometimes I think ten years, sometimes 20, sometimes that I’ve never been right…
A good GP can deal with most day-to-day management of MS, especially if they are willing and able to prescribe symptom relief, and to refer as appropriate to specialist disciplines like neuro-physio. You don’t technically need a consultant’s say-so for any of these things, so if your GP is good and proactive, you might find trotting up to the hospital once or twice a year for your regular chat about how it’s all going is a bit of a waste of time - yours and theirs - if things are relatively stable, and have been for some time.
Certainly, that has been my experience so far. My present neuro is a very kind and interesting man (the previous one was also nice, but rather on the brusque side). We usually have a jolly interesting chat, before deciding to do…NOTHING!
As I am bordering on phobic about the hospital - not helped by the fact I don’t drive, and get myself in a right royal state about whether the bus will get me there in time (which it hasn’t always), these chats have tended to be rather counter-productive - causing only the anxiety of a hospital visit, without a corresponding benefit!
So it really depends what you’re like as a person. Some people like a lot of face-to-face contact with their consultant, just to make sure they’re not missing out on anything, even if it rarely or never leads to anything that would have been outside the remit of a GP. Others (like me!) feel that the fewer medical appointments you can get away with, the better, and seek to avoid an overly “medicalised” life.
So it really depends on (a) you, and (b) how you rate your GP, whether you are happy to leave things as they are, or want to press for more time with the consultant (even if the latter is mostly for reassurance, and won’t necessarily lead to anything new).
Of course, if there was a sudden, dramatic change in your health, or anything the GP simply couldn’t answer, I’m sure you wouldn’t be denied access to a consultant, whether or not you were already on the books for “routine review”. My appointments are down to annual now, because I get so stressed about them, and because I’ve been pretty stable since diagnosis. But always on the understanding that I could get in touch sooner, if I was worried about anything, and wouldn’t have to wait the whole year round!
Mostly, nothing happens (touch wood), so I’ve never felt the need to call them. I do think, as time has gone on, there has been some quite subtle deterioration, and very occasionally something that might or might not have been a relapse (if it’s so slight you’re not sure, it’s not a very bad one). But so far, nothing I’ve felt to be an emergency, so I’ve been content to leave things as they are. My next scheduled hospital visit is March, and I’m hoping there won’t be anything before then.
Tina
x