I have appt with MS specialist (not nurse) on 15th Jan, and called neuro dept today to query why i was seeing a specialist as opposed to nurse for DMT.
They were not forthcoming with any answers as to why, but said it appeared likely to do with number of lesions on my mri, and that i am not guaranteed to be passed for DMT. I remember her mentioning the word rapid a number of times also.
Is this normal practice to see a specialist first? Or are the standard neuros not permitted to order DMT?
Hopefully one of a number of you vastly knowledgeable people can help
i’ve been dx since march and haven’t been offered DMDS reason being the relapse i had was classed as mild and you have to meet certain criteria to qualify for them.hopefully someone will answer as to what qualifies you for them
I had to go through a sort of vetting procedure (not quite as painful as it sounds) with a second neuro, even though I’d already been diagnosed by an MS specialist, AND told I was eligible for DMDs.
The second neuro took a lot more detailed clinical history (I thought it was really odd to do this AFTER diagnosis, not before), and gave me a much more thorough physical examination than I’d ever had for the purposes of diagnosis. She also had me walking up and down the car park in front of her for ages, to PROVE I could meet the walking criteria (some of the DMDs are only on-the-cards if you have relatively well-preserved walking, as well as having had the requisite two “clinically significant” relapses in two years).
The whole assessment lasted about an hour, which I’d not been prepared for at all (nobody had explained why I was going, or what would happen), and I got home quite tired and distressed - so be prepared for it possibly being quite long and demanding, then you won’t get caught out like I did.
I’ve yet to hear from anyone else who seemed to have all this lot, so I don’t know if it’s a peculiarity of the hospital I’m with (Frenchay).
I waited absolutely months for the appointment (it was cancelled once, on the morning I was to have gone), with the DMD decision still up in the air. In the end, I declined them anyway, so wished I’d saved myself months of anxiety and a rather needless appointment. But I felt I owed it to myself to leave my options open, so jumped through the stupid hoops, even knowing I’d probably say no.
As Tina says, different PCTs do different things, but it’s true throughout the UK that not all neuros can prescribe DMDs and only certain specialists can prescribe the stronger DMDs and only if the patient sees them at particular hospitals.
I could be completely wrong, but the word “rapid” suggests that you might be eligible for Tysabri - and this might be why you have to see a particular specialist.
Tbh, it’s all guesswork though - might be best to try and forget it for now and deal with it in January.