Appt on Wed... what questions do we ask?


I posted last week that my 18 yr old daughter had been told and yet not told that she has MS (she had a CIS 4 years ago, and has had symptoms on and off since then… last week we saw a neuro who confusingly said she doesn’t have MS now (despite new areas of demyelination on her MRI scans) but that she has an 80% chance of getting it in the future.

So - today we heard that she has an appt to see the same neuro on Weds (yikes!) in his MS clinic.

So my Q is - what should we be asking him? We are so new to this that I feel really uncertain . I imagine we won’t get to see him again for a long time, so I want to get everything covered… her main problems are fatigue, and joint and muscle pain - but she also has a problem with word retrieval and with continuing double vision… my feeling is that I need to ask about all these things. What else should I be pushign for? A diagnosis, maybe?!

I should say that my daughter is so terrified that she doesn’t want to see him again - she wants me to go for her! Poor girl. Fingers crossed, eh?

Thanks for any help and advice!

Medicate-if needed-types Nurse contact Physio -when Next appt Scan? LP? Vep? Needed or when Been DX MS.? Write anything down in a notebook from this isit to next-you will forget Good luck Mike:-)

If I were you, I would say that you have heard that the McDonald criteria were revised recently (2010) and could he please explain them to you, and exactly how your daughter fits against them. (I do not understand why he has not diagnosed her yet - there must be a reason, but I can’t think of one other than he is not yet convinced that it is MS. If this is the case, then he needs to come clean.)

I would also ask for help with the main symptoms (meds, physio, whatever) and if your daughter can have the contact details for an MS nurse (first point of contact for neuro advice).

Double vision can be helped with prisms in glasses - best to see an optician - there’s nothing the neuro can do for this.

Word retrieval is a difficult one. The neuro can’t help; only refer her to a neuropsychologist and there’s nothing they can do really apart from assess the degree of her problems.

So if I were you, I would mention them, but I would push for help with the pain. Meds and physio could be useful.

Good luck.

Karen x

Your poor daughter. She is so young and she must be terrified. I would ask anything you want to ask. If you don’t ask you won’t know the answer.

You both needs answers so you can get the care needed.

Thanks for that - I’ve written down those suggestions and will ask those questions and anything else I can think of - and will write the answers down.

My poor daughter is so stressed about this and is just dreading going there today. What we hear could be completely life changing. Wish us luck!