Questions for Monday?

New diagnosis and before diagnosis
1

Hey

I’ve got a hospital appointment on Monday for an examination and to discuss MRI results. I was hoping to get some help with what (if any) questions I should be asking. I don’t want to be in the position where I get home, should have asked a question and have to wait x months to ask again.

Here’s a brief overview of where I’m at

  • Optic Neuritis (mild)
  • MRI showed 3/4 lesions in MS suspect regions
  • No other symptoms, no previous attacks that I’m aware of. (but it’s debateable)

–

Obviously, I’ll want to know what his opinon is, but - depending on size of lesions, I’m expecting him to say possible/probably MS or suggest a mimic of some sort.

I’ve made the decision that I’ll want medication at the earliest available opportunity. I’ve also read that Vitamin D is good and I’ve started an over the counter supplement, but is there something better suited?

I’m actually seeing a neuro-opthamologist on Monday if that makes a difference.

I don’t really know what to ask / request if I’m honest, I’ll just be like a lamb, haha.

Any advice welcome!

2

Hi, I know leading up to an appointment, you can fret about what might be said and to have the right questions ready.

I guess it all dpends on what the doc says.

But if it was me, I would write a list of current symptoms.

Then after you`ve been told what the MRI results are, ask about treatments/meds.

If poss,take someone with you, as a 2nd pair of ears, because it is very easy to forget some of what is said, or to get it a bit muddled.

Good luck and let us know how it goes, yeh?

luv Pollx

3

Hi MGW,

Don’t feel you have to ask anything, as if it would be impolite or irresponsible not to. I suggest you stick to things you genuinely want answers to, and if there aren’t any of those at the moment, don’t feel forced to think of some. As neuros are invariably pressed for time, they’d probably appreciate the patient who says: “Thank you, but I really don’t have anything else at the moment”, rather than ask something just for the sake of it. It shouldn’t be like a job interview, where you feel you’ve got to come up with a winning question, or risk looking really dumb and disinterested.

IF, as seems possible, it turns out to be a diagnosis, you may find they don’t actually expect or encourage very detailed discussion at the time. They know that even a patient who’s been expecting it may find diagnosis a great shock, and will not necessarily be thinking very calmly or rationally - so not a great time to make key decisions, or take on a lot of extra info.

I won’t say I was actually prevented from asking questions, but it was made clear to me the main purpose of the appointment was to break the news. I was then asked whether I was OK, and encouraged to go home and take some time to absorb it, and: “We’ll be in touch with you again”. So I wasn’t expected to make a treatment decision there and then, or even to get involved in the discussion.

Obviously, if you do know you’re keen to start treatment, there will be no harm in mentioning it, but you will probably not be asked to commit to anything on the spot.

If you’re worried you might forget something important, why not ask if there’s a way you can contact him, if you think of anything afterwards? OK, face-to-face might be better, but if you ask: “Can I leave a message with your secretary, if there’s anything important I forgot?”, it seems unlikely he’s going to say: “NO!”

Tina

4

I think the main thing that I would ask is if I can have the contact details for an MS nurse so that, should anything new happen, I had access to expert advice (and a conduit to the neuro!).

I hope it goes well.

Karen x