Forum

What are the important questions to get answered at the beginning

Hi all

I would love some advice please for a friend, who has been diagnosed with MS recently: what are the most important questions to get answered by the neurologist?

What do you suggest are the most important things to know please? Don’t want to come away form the next appointment without the knowledge we need to move forward.

Thanks in advance

Hiya. I got diagnosed about 2 weeks ago and found the questions towards the bottom of this page-https://www.mstrust.org.uk/about-ms/ms-treatments/making-most-appointments really helpful. I also asked if I could still drive (my eye was affected), if any particular foods should be cut out or increased, if any herbal supplements or vitamins would help, when I could go back to work (I had been off for 3 weeks) and if I should go back with reduced hours and also if I could still drink… I also asked what he thought would happen without treatment and whether he thought I should start treatment now. And make sure he or she takes someone with them. Always good to have a second pair of ears to take it all in. I didn’t remember half of the answers I got, but my boyfriend was listening for me. Hope that helps x

There really isn’t anything like a magic list for your friend to tick off. The big problem with MS is that we all experience MS really very differently, so what I might ask won’t be what your friend needs to know.

It’s more about having a conversation about your friends symptoms and variety of MS. Some of this s/he will perhaps know or guess already, ie what variety of MS do they have? (See https://www.mstrust.org.uk/about-ms/what-ms/types-ms )

Once that’s been established the question will be what disease modifying drugs are available for them? The answer to that question really initially depends on the answer to question one. If they have a pattern of relapses followed by remission, there are many DMDs available. If s/he has a progressive form of MS, there are few (in fact only one) DMD - Ocrevus.

What I’d advise would be for your friend to write a diary/timeline of what has happened up to now. This will help at the first appointment. S/he should also think about exactly what s/he needs / wants to know. Things like availability of an MS nurse, drugs for symptoms as well as prevention of relapses/progression. Also, is there a dedicated neurological physiotherapist in the area to whom a referral could be made? While writing the timeline, your friend should also keep notes of their own questions.

Someone should, if possible, go with your friend to the appointment. Their job will be to remember as much as possible. It’s too easy to leave an appointment remembering very little of what was said. So having a trustworthy companion is essential.

Your friend is fortunate to have you asking these questions, but basically they need to think about what they already know about MS, what they don’t, and what they want to know.

Sue

Thank you so much for your replies that is really helpful. I have been to all of the appointments with her and will continue to go as it’s definitely best to have two sets of ears. Her next appointment is not for a couple of weeks so we’ll compile a list and I’ll advise her about the diary. Thanks again - very grateful for all advice