hi can anyone help please i was diagnosed with RRMS on Wednesday the ms nurse that is also my sisters nurse said she would phone me on Friday but i haven’t heard anything as yet but i feel ike im in limbo i had a diagnoses and then the neurologist said it then goes to panel so i can then start treatment but i don’t know what she means about panel or when treatment will start or what to expect any advise much appreciated. i had some information to look at and go through with the Ms nurses number on there do i phone or do i just wait for her to contact me … this is all new and im tired and worried
It’ll sort itself out.
What generally happens is that the neurologist has to present a case for a disease modifying drug to their Multi Disciplinary Team (often just referred to as MDT), what your neurologist is calling a ‘panel’. You clearly fit the criteria for a DMD so that will be just a formality. Your MS nurse may attend the panel meeting, or possibly not. Mine goes to the MDT whenever one of her patients is being discussed, especially if it’s a bit contentious.
Once the panel has given their OK, the neurologist applies to the Trust for funding of your DMD. This has to be done on a case by case basis, but again, it’s more or less a formality in someone who clearly fits the criteria. (My new neurologist was going to apply for a DMD again for me, but I definitely do not fit the criteria so my MS nurse has said she’ll pull the plug on the request.)
So once the funding is in place, your drug treatment can start. It really shouldn’t take too long, a couple of weeks maybe.
It’s a bit rubbish that the MS nurse didn’t phone when she said she would, but that does happen; they get busy and people get left off their list. I’d give her a call on Tuesday. Most MS nurses don’t stand on ceremony, they’re pretty informal. You perhaps already know the nurse as she’s your sisters nurse, but you need to establish a separate relationship with her on your own case.
It is a big thing, I know you expected the diagnosis, but you still should give yourself time to wrap your head around it. You will be tired, scared, worried about the future and concerned about the drug treatment. Don’t expect to be calm and relaxed about it just yet.
Look after yourself.
Thank you sue for replying that makes more sense I’m sure she will get in-touch with me soon I’ll phone on Tuesday if I haven’t heard anything before
Sorry to jump on your post.
I am in the same boat as you, my follow up letter said ‘I will make the necessary arrangements to apply for funding of Copaxone’ and my nurse will be in touch to arrange supervision of the first injection.
My neuro told me at consult that it takes about 2 months which I thought seemed rather a long time, I am 4 weeks into the months so may ring in a week or so to find out what is going on.
I to feel like I am still in limbo and feel like ive wasted months without treatment when things could potentially be getting worse.
having said all that my ms nurse is fab and will tell me where things are up to.
hope you get sorted soon
After many many months (probably 2 yrs in total) ,I was diagnosed with RRMS ,nuerologist told me that I was “lucky” (I didn’t think so) that I had RRMS as first diagnosis at my age (then 57) now 58. However I had symptoms for along time but generally made and told that I had an anxious personality !
Any way (I digress) after being told by letter that I had MS (I complained about the way I had been informed basically I was frightened) , MS nurse contacted me and within 2 weeks I had been seen by her and the nuero.After my MRI results were discussed and history taken I was told that I did meet criteria for DMD and this would be discussed in the monthly team meeting.
I then received a letter stating the out come of the meeting ,the team had decided that they felt it best for me to be offered Ocrevus infusion .
It all in total took around 4 months for treatment (making my informed decision was the hardest),I had Ocrevus in March next one being in Sept.
There is mixed reviews with all treatments and can feel a bit overwhelming ,I really feel for me that having others who have ms to talk to helped me but everyone is individual .There were times when I just wanted to know that the bizarre symptoms that I was experiencing was part of ms and that I wasn’t going to drop dead (believe me at times my anxiety exacerbated symptoms) and I have learnt to manage things better with support and thes sites /forums helped me.
All the best with to you all. Dont be afraid to ask for help if needed.
Thanks all I phoned the ms nurses and left a message and within an hour I had a call back and then another call back from my ms nurse who is meeting with me tomorrow I feel a bit more relaxed now