Hi All,
I do hope you are well.
I last had an MRI in March (no extra lesions as the results letter said, when I chased). I had a booking with a doctor which was put back to November, which when I looked carefully was November 2026. That would be 20 months since the MRI. Phoning to query this, they said there were no appointments available before that. Without wanting to whinge, that seems a very long time to me, but I would be grateful if anyone could share at all. Is this usual? Am I being silly/spoilt? Also, is it usual to have access to an MS nurse to talk to, or is that for the lucky few? I am keen to know what is reasonable/normal.
Thanks in advance for any thoughts.
Anji
Hi @anjipierce I think it varies drastically depending on where abouts you live in the UK. I reside in Norfolk. In the last ten years or so I’ve seen a consultant every year.. during one of those pandemic years it was actually a phone call. I have been diagnosed for over twenty years now and I did see my consultant yearly at the beginning then. There was a couple of years in which I didn’t but, in more than twenty years there’s been just a couple of years when I haven’t seen them. The ms nurses I saw regularly until the pandemic too. Though my last appointment with her was back in 2021 and funnily enough today was the first time I’ve seen her since then. That’s probably been the longest period I haven’t seen any one although as I said..I did see my neurologist during that time. As it is she’s already pencilled me in for this time next year and my next neurologist appointment is in February..it was February this year too. Wishing you all the best and hope you get to see a neurologist and or an ms nurse as frequently as it’s possible for you to do. You can always ring them if you have something specific to ask them.
Yes, I also think it varies. You could look at the NICE guidance on MS, see if that gives any indication.
My guess is that the aim in most places is that you should have an annual review with a neurologist - by phone or in person. I’m not sure if that applies to everyone with MS, or those on DMTs. But I have heard of a case, for example, of someone with SPMS who was asked by his neurologist if he felt there was any point having annual appointments since in those days (years ago) there wasn’t much they could do for him.
The reality for me has been appointments are not quite annual because the service is overloaded. And MRIs is even more of a problem. I get the impression they are doing their best but they just don’t have the resources.
I do think you should have access to an MS nurse if needed e.g. a relapse or symptoms for which you need help.