Tell me what happens when you see your neuro, please?
No names - no pack drill please people! I’d really like as many responses to this as possible so no clues as to who your consultant is. Not even a teeny-tiny one or I will request deletion of the entire thread. We can always message each other.
- Are you made aware of the purpose of the consultation?
- Do they do a physical neuro exam?
- What questions do they ask?
- If you have prepared a sheet summarising what has happened since you last attended and with your key five questions on, do they read it and address it?
- Do they start with very open questions ‘tell me what’s been happening?’ or are they more focussed? Do you feel there is a structure and that they are in control and engaged, or does it feel more like trying to explain to some stranger on the bus?
- Do you have trouble remembering details and dates (brain fog!) and feel pressured, flustered and upset if expected to do so?
- If you are on a DMT, do they know which one and when you started?
- Do they know what the common side effects of your DMT are?
- If you are on a DMT, are they aware of your blood test results?
- If you are RRMS, do they ask when your last relapse was? Or do they know already?
- Do they know how your last relapse affected you?
- Do they ask which symptoms are causing most problems for you?
- Or don’t they ask about symptoms and impact on your life at all?
- Do you feel your neuro is interested in helping to improve your quality of life?
- Do you feel your consultations are useful and constructive experiences with a purpose? Or would you like them to be different?
- Do you start sobbing with frustration 3 minutes in, snivel and blub through the rest of the consultation then finally stop talking because it is all so utterly pointless? Do you call your MS Nurse in incoherent tears on the way home, then continue to cry for hours and feel utterly ashamed, embarrassed and defeated? And lose sleep? And think you could have spent the £25 it cost to get there on something that would have actually made you feel better, like a manicure, or massage, or even new socks And wake up next day and decide you are going to sort the whole system out? No? Just me then
(by ‘do they know…?’ I mean can they find the info on the computer screen in front of them or do they expect you to tell them everything, not do they have all the details of every patient stored in their heads)