My wife has a first appointment tomorrow at home to meet the MS nurse following her diagnosis.
What should her expectations of this be? What kind of things can they do to help her?What questions should she/we be asking? Is it likely to be be a gentle introduction type meeting with little real substance or do they get straight down to things like Dmt options and get that ball rolling at this first meeting?
Ollie
hiya
i wish that i could give u a nice standard answer but it depends on the nurse-experiences are so varied.
hope its ok for u both tomorrow.
ellie
Hi Ollie Sorry to hear of your wife’s diagnosis As Ellie said it is all so different for each person. For me my first appointment with the nurses was to a seminar with others where they showed us treatment options. Perhaps this is what they will do at home…I’m not sure having never had a home appointment. It is a good idea to have a list of symptoms to share with them as they learn more about the circumstances and the normal your wife is at. To be honest tomorrow is a good opportunity for you to seek help and understanding even about things like work and ms and relationships and ms. Don’t worry if you’re not even sure what help you need yet the nurses will be there when it’s all settled down a bit. Wishing you both a positive and helpful meeting tomorrow x
As Ellie says, experience varies widely. So what my MS nurse does is going to be very different to yours. I feel very fortunate that I get home visits from my MS nurse. And these days it’s very much driven by what’s going on for me. I know her pretty well.
I’d expect him/her to go through your wife’s history, how she was diagnosed, what symptoms she has and of course, the DMD options available to her.
I wouldn’t expect it to be a gentle ‘getting to know you’ appointment exactly, that would be a waste of everyone’s time.
Maybe, just like with a neurologist appointment, it’s worth you and your wife having some thoughts about what you both want to get from it. And with some luck you’ll get a good nurse. I’ve known 5 MS nurses in all, 2 are community nurses and the other 3 work in the treatment centre doing Tysabri infusions, Tecfidera clinics, and now Lemtrada. They’ve all been pretty good. And I’ve never had an appointment where I didn’t get what I needed from the appointment.
Good luck Mrs Ollie.
Sue
Thanks All
How did it go today Ollie?
Went really well,the nurse was really nice and was here for almost 2 hours and seemed to cover everything! What was particularly good was My wife was quite honest about her difficulties rather than playing everything down or denying it all like she has a tendancy to do.A perching stool has been ordered for her for kitchen and seems my wife will be seeing an ms physio,is being referred to a bladder nurse who only has a couple of weeks wait for appointment,and will be going fairly soon to a group session to learn about the DMT etc. Its great about 14 months since she had a major disabling attack to feel like some support is coming at last!
That sounds brilliant Ollie
A nurse who your wife likes and can be completely open and honest with is exactly what she needs.
And to be referred on to all the necessary services like physio and bladder nurse, getting a perching stool ordered and having a group to go to re DMDs is fabulous. It might be exactly what Mrs O needs, to meet other people in similar circumstances while finding out about DMDs.
Good, I’m really glad to hear it.
Sue
Hi Ollie sorry just got out of work … it sounds like you had a fantastic appointment and nurse. All positive steps forward and it’s so much easier to step forward in the scary world of a chronic condition when you have support like your wife has in you and you both have from the nurse ! My best to you both x