Hello. I’m new to this site and I was after some advice. I was diagnosed with RRMS 3 months ago. I’m seeing my MS Nurse tomorow for my 1st proper appointment. I’ve been keeping a diary of all the little things that have been happening to me the last few months. What sort of questions should I be asking tomorrow?? The main thing that’s happening with me are my legs are wobbly/painful at times during each day. I had an mri at the beginning of my 1st relapse. But am not on any treatment at the min. Any advice would be great Thankyou
What happens after MS diagnosis.
NICE recommends Extavia, but rejects Copaxone, Avonex, Betaferon, Plegridy and Rebif.
I find the MS Trust helpful.
The appointment ‘should’ be about you. So what you need from it. I would guess the main focus will be on giving you info and trying to help you deside on a DMD.
But if you have anything you really need to talk about, write it down & put your list on the desk as soon as you walk in. (So you don’t get distracted & forget you had q’s)
Thankyou for your reply x
I’ve got a list prepared so hopefully I’ll get what I need from my appointment today. Thankyou for your reply x
hope it went well nicky
Hi carol My appointment was cancelled. Nurse was ill. Theres no appointments available for at least a month. So I’ve got more thinking time I guess. Nicky x
Typical! Well, Nicky welcome to the club. Most of the infor the MS Nurses use comes from the MS Trust or Bart’s Blog so you might as well get to know these websites. All the answers are there under ‘Understanding MS’.
Or Bart’s Blog (the researchers) http://multiple-sclerosis-research.blogspot.com/
Or you can ask us.
Thankyou Fay. It’s nice to have people to talk to and ask questions
Unfortunately MS Nurses are run by Virgin Care - it’s rather like Virgin Rail - a poor service due to overcrowding. My MS Nurse has an answer phone and is part-time - so it takes 10 days for her to reply to acute or new symptoms - so I’ve learnt to: look new symptoms up, or ask someone on this Forum and then contact my GP and get help, or call the neurologists secretary at the hospital. However, MS Nurses are useful to keep in touch with for Care/Management Plans and other Community Rehab services keep all their reports or letters on your care as they can be used as NHS evidence for ESA and PIP whenever you need to apply - going forward. So a good NHS paper trail will help access benefits. All the best Fay