Hello nice people. After I was diagnosed in late September, I will see the MS nurse for the very first time next week. She has sent me some leaflets with the DMTs the neurologists suggest. I have done my research and decided what DMT to go for. I suppose I will discuss this, but what else usually happens on the day? Do they share generic advice, do they talk to you about work or benefits, or health stuff only? I will write down a few questions I have for her. My husband will be with me in the room if he is allowed in. Any tips for me? TIA
Hi Maria, I don’t really have any tips except tell the MS Nurse all your problems. I’ve come to trust the MS Nurse’s and think they’re are really nice and do try their best to help.
My first meeting was a long time ago but, I believe you’re shown how to administer your agreed treatment for multiple sclerosis; it was Avonex back then and Kesimpta more recently.
It’s usually the MS Nurse who calls to check up on how you’re getting on with the treatment, a few weeks or months later.
It’s the Occupational Therapist you need to meet, if it’s for anything work related.
Hi Maria. It’s a long time since my first appointment but:
Your MS nurse will be your main point of contact from now on and she/ he will be with you for many years (I’ve had 2 in near 17 years) so the first meeting is an opportunity to get to know each other;
The nurse will probably ask you about your main symptoms and any difficulties you have ( she/ he will ask about these and any new symptoms in future meetings)
It’s an opportunity to ask any questions you might have - no matter how simple they might seem
She/ he will probably talk about various support services that you can access
From what I recall, my Nurse talked a bit about the DMT but I was given an additional and home meeting with a nurse from the drug manufacturer who showed me how to self inject the Avonex, side effects etc, what to do in case of side effects etc and other stuff
Way back when, the team of MS Nurses at my local hospital used to organise a series of group sessions for ‘newly diagnosed’. I now can’t remember what each of those 6-7 sessions covered but I do remember they were useful.
Overall, I think your first meeting with your MS nurse is an important opportunity for you to ask questions, talk about worries , concerns etc and basic stuff about what next etc, etc.
Both of the two nurses I’ve had have been very helpful, understanding and supportive
Thank you all. I feel a bit more positive. Will let you know how it goes tomorrow after the appointment.
Hi. Just to update you, it was a long meeting but it went ok. I felt at ease. The nurse was very helpful. I asked loads of questions about anything I could think of.