Hi Sam,
I personally think this is a matter of personal choice, and that you do not “have” to see anyone about anything, unless you wish to.
I am still officially RRMS, but like you, only on symptom relief, not DMDs.
I have often wondered whether it’s pointless to keep going, as I tend to get very stressed about the appointments, even though my neuro is nice.
I do not think it would make a whole lot of difference to my life if I stopped going, as we usually just chew the fat about a few things, before deciding to leave everything exactly as it is! So really, I only go to keep on the books in case (1) anything changed drastically on my side - even though he cannot fix it, he could refer me to appropriate support services, like pain management, or occupational therapy, or whatever, and (2) in case anything changed dramatically in the world of treatment, and he was suddenly able to offer a much lower risk, more effective treatment than anything hitherto on offer, and that would be good even for someone who hasn’t had a confirmed relapse in years! (Yes, I know - I’m still RRMS, yet apparently not relapsing, so drugs to prevent them wouldn’t be much use in my case!)
So I do feel, really, that most of the reason I go is just “playing the game”, in case I might ever want anything from them, but not because I’m really finding it of personal benefit.
So what about you? What do you want? I can’t tell, from your post, whether you’re upset about not having an appointment in two years, and feel you’re missing out, or were finding them pointless and a nuisance anyway, especially if you didn’t get on that well with him.
No, I don’t think it’s a “must” to be routinely monitored, especially if you have a progressive type, and not much can be done. Your GP should be able to cope with symptom relief. Your neuro presumably can’t think it’s a “must”, either, if he hasn’t called you in two years - or did he, and it fell through for some reason?
Are you asking whether you should push to see him? My answer would be: “Only if it’s bothering you.”
Tina
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