Hi tomorrow I have an appointment with a different neurologist and I was wondering if anyone had done this and had any advice.
I’m not questioning if I have ms or my current treatment for the ms itself, it’s just I have been diagnosed for around 3.5 years and I have seen my neurologist around four times for no longer than 5 minutes each time. I almost always leave my appointments with a feeling of disappointment or that it was pointless.
Then I hear from my gp there is a neurologist in a (closer) hospital and travels to local community hospitals when she can. Also my gp tells me that this neurologist has done a lot of research into ms and even as far as to say ms was her “baby” and that she is very hands on with her patients.
So if anyone has had a second opinion could you give me some advice in what I need to prepare and how to discuss my current neurologist without sounding like I’m being over critical of him?
Also is it weird that it feels like I’m cheating on my current neuro and hoping he doesn’t find out?!
I have not personally done this (or felt the need to), but rather than criticise your current neuro, why not just tell the new one that you felt you would like to meet her, because she came very highly recommended by your GP?
That way, you are complimenting the new one without saying anything disrespectful about the current/old one (you never know - they might be friends!).
If she asks outright if there’s been a problem with the current neuro, try to keep it as neutral as possible, and just say: “Not really, except he always seems very pressed for time”, or something like that. You could also mention the practical aspects - that you had not been aware there was (potentially) anyone closer! Those all seem perfectly sound reasons for considering a change, without having to say the first one was dreadful. And you won’t have burnt any bridges, either. If the new one’s not all she’s cracked up to be, or you just don’t take to her for some reason, you won’t have said anything unkind about the existing one, that may be a barrier to going back.
As Tina says, I would avoid being critical of your current neurologist. However, if your current neuro isn’t an MS specialist and the other one is, then there’s no question, ask to be referred. Several years ago, it was suggested to me by my MS nurse that I ask to be referred to a different neuro as he is a specialist and very keen on new treatments etc. He actually is part of a different PCT as they were known at the time but that was irrelevant, it was all about specialisms. I was referred and he subsequently referred me to yet another neurologist in a different area again as (at the time) the Tysabri clinic wasn’t set up in his area. He also referred me to a rehab specialist coincidentally back in my own area.
So now I see the MS nurse from my own CCG (Clinical Commissioning Group, the term replaced the old PCT) area, a consultant neurologist from a neighbouring CCG (his clinics for Tysabri, Tecfidera etc now being fully established) and a rehab specialist neurologist from my own area.
If of course both your current and the alternate neurologist are MS specialists, you’d need to find another reason to get referred elsewhere, but you could try, maybe the one you want to see has a drug treatment facility not available from your current neuro. It does sound like the alternate is a specialist though so it shouldn’t be a problem. They are all used to referring people all over the place. It still means that your care is funded by your local CCG.
Ive just realised you already have an appointment with the new neuro. In which case, you just go through your history and see how she deals with the question of your continuing care.
(Note to self - learn to read posts properly the first time!)
I meant to have everything down on paper so I don’t forget anything but I also don’t want to go in with a handful of paper like I do with my GP!
I have never been in this situation before even when my current neuro called me back for my MRI results he basically looked at the scans and just said “yip I think it is what what I thought it was” and I had to actually say “so it’s MS then?” And he said yes flicked though the scan once more then told me a MS nurse will be in touch with me hopefully sooner than later!
I haven’t had a sit down with just him since that day, it’s always the nurses then those rare times I do see him, he stands in the doorway and hmmms and haas about options etc.
So sitting down with a consultant to talk about my ms will be a new thing for me since I was dx in 2012!
I really don’t want to criticise anyone and will do my hardest not too!
My experience has been that every time I’ve seen a new neurologist I’ve had to go through all the history from my first symptoms to what’s happened over the last couple of years. I’ve ended up really wishing I’d written down the relevant information in order that I don’t have to go through it all again - one more time. I doubt that you’ll get the chance to feel disloyal to your original neurologist. Just don’t feel like you’re asking for a second opinion, all you’re doing is seeing someone who might a) have more idea about MS and b) might have more time to spend on what you need to keep your MS from progressing any more than absolutely necessary.