I have received my appointment date and there are so many things I want to ask but I don’t think the neurologist will have time for my type of questions. Is there anyone i can speak to who will understand without judgement?? I know there is an ms hotline but I’m not diagnosed and to be honest reading the stories on here has made me think I won’t be. I don’t want to waste a professional persons time when they could be helping someone who is in serious need if you know what I mean. My questions are more trying to add the dots to my own story so not very generic?
you should be allocated an ms nurse and this might be the person to ask all your questions to.
you have every right to ask your neuro, just ask about the ms nurse first and then ask if this is the person you should ask next.
honestly you are entitled to ask anyone because you have been given a life changing diagnosis so stop feeling bad about it.
i’m very disappointed in myself because i can’t think straight, sorry.
tell your neuro what you told us about joining the dots.
Give the MS-uk A RING; http://www.ms-uk.org/ They used to be there 24/7; don’t know if they still,
Thank you x
You have list of things you want to ask about. My suggestion is that you divide it into two lists. There’ll be some overlap, but never mind - it’s the general idea that matters.
The first is the list for the hospital specialist, the medical technocrat who is the expert on all technical matters neurological. That might include symptoms and time-lines and test results and what the plan is from here in terms of finding out what is the matter with you and deciding what to do about it.
The second is much more about fears and feelings and how to deal with the uncertainty and distress of your current situation. And that is where sources like the MS Help Line can be an great help.
You are quite right: hospital doctors just don’t usually have the time to deal fully with the whole patient rather than just the particular bit of him/her that has gone wrong. It’s not that you would be wasting their time, or that they would feel you were, it’s more that they usually simply do not have the time. That’s why I think you can make best use of that consultation by narrowing down the things the neurologist can tell you about that no one else can: i.e. mainly technical ones. Then you have the MS Help Line and us on here and whoever else to try to help you with the other stuff.
Having said which, sometimes you will find a neurologist who, for whatever reason, seems prepared to give you all the time you want (or be so good at his/her work that it feels that way to the patient!) If you strike lucky like that, make the most of it! But I think you are right to assume that a fairly brisk consultation is (alas) the more likely.