So after doing research I’ve decided on the DMD’s that I’m going to for. Hasn’t been an easy decision but have decided on rebif. Seeing the ms nurse tomorrow for the first time. I’m sure she will explain this but do I contact the consultant and let him know which DMD’s I’ve chosen or does the ms nurse do it? Got a good relationship with my consultant and have his email address and he usually replies within 24 hours (lucky that I choose such a good neurologist after the first one was shocking!!) I’m just aware that it can take quite a long time to get approved and then organised and don’t want to hang around too long so thought I’d make sure I get the ball rolling wherever possible. My lupus consultant has written the letter to the gp with what drugs he wants me to use for the lupus so should be getting that prescription sorted out next week and he’s put down that he wants me to have investigation for why there’s been blood trace in urine samples for the past 9 months so finally he’s getting things done- I’ve been on at the gp’s for months about it! It just goes to show that I’ve been the one that has been pushing for things and I was the one that worked out my own diagnosis of lupus and ms!!!
well done karina for your diagnostic skills!
you’ll be able to ask your ms nurse whether you need to tell your consultant
they do liaise very closely
your nurse should be able to give you some idea how long it takes to go through
she’ll probably refer you to a bladder nurse or urologist
and maybe occupational therapist and physio if you have need of them
good luck
carole x
Good for you this route will allow you to upgrade to tysabri or Gilenya/BG12 in the future.
From telling Neuro bod to getting Rebif for me was 4 to 5 weeks.
I personally think taking 2 ibuprofen 1 hour before injecting kept the so called flu symptoms away better than paracetamol but
your have to work out whats best for your bod.
Oh also you being a girlie and all I’m sure you have tweezers as every so offen with rebif smart the needle gets stuck
and won’t come out.
Oh also you being a girlie and all I’m sure you have tweezers as every so offen with rebif smart the needle gets stuck In the machine, that is, NOT YOU !! Before you get the fright of your life !! Xx
Oh good point MrsH LOL
Hi I started my injection with 3 weeks of making the decision. Which I thought was great service as everything else seems to take months to progress with anything to do with MS. Barney
That’s positive news that it didn’t take long! Thanks mrs h I probably would have been terrified if you hadn’t have clarified that! Lol! Hobs!!!