Hi there, was diagnosed with ms about a month ago and have my 1st MS Nurse appointment at the start of June. Just wondering what others experiences were and what to expect?
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Hey,
My first experience was that she gave me a lot of things to read and gave me the low down on MS. She also gave me info about local services that might be helpful along with giving me info about my possible treatments I might be offered.
So don’t feel like its going to be a medical its more a chat to see how you and doing and what they can do to help. Mine gave me a card with their number on which I keep in my wallet just in case.
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Hey! Sucks to hear that you’ve joined the MS gang, but hope you’re doing okay.
My first appointment was pretty similar to @PeteTheTechGuy’s. So far, every nurse and consultant I’ve had has been unbelievably nice, and basically offers a helping hand rather than expecting you to know anything. They started simple, asking what I knew about MS (which was nothing) and then talked me through different meds that are available. Gave me some reading, told me to take my time, and we’d decide together what was best. All-in-all I was in for only about 30 minutes, but the relationship with your nurse will likely be an ongoing one so don’t feel the need to say everything in the first session.
My mental health wasn’t great when I was diagnosed, so my nurse also noticed this and referred me for some therapy sessions. If it’s something you’re thinking of, I’d totally recommend it. Enough going on with your brain right now, so good to try and keep your mental health in check.
Hope it all goes okay for you!
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Hi Gluten-free. My experience was pretty much like those of Petethetech and beefparcel. If you are lucky you will have the same nurse for years to come and she/ he will be your first point of contact for any problems etc. I think that with the way things are in the NHS these days, and with a shortage of MS Nurses, you might find a bit of a delay getting a response to any queries etc but they will get back to you. I get 6 monthly meetings with my MS Nurse when she asks how I’m getting on, any problems etc. ( including any problems with whatever DMD you take). I think that the best way to think of your MS Nurse is as a friendly, informative and supportive first contact. She he will be used to dealing with newly diagnosed people and quite understanding about any questions, fears etc that you have
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Thanks for the replys, they’ve certainly helped to set the scene on what to expect.
Hi Gluten Free, pretty much what everyone else has said,loads of booklets and information plus physio appointment and occupational therapy appointments. Any questions you can think of write them down and take with you. MS nurse appointment every 12 weeks and bloods depending on what dmd you choose
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