Well today I had follow up with MS Neuro and he has finally committed 100%to a diagnosis of RRMS which he called “Active” as evidence of at least 2 relapses between Nov 17 and July 18, with lesions still enhancing on MRI in Jan this year albeit the same ones.
He is going to write to my GP for me to recommend Nortryptiline whih he thinks will help with Nerve Pain, Spasms and Sleep (Oh how wonderful if it does!!)
He asked what I wanted from a DMD and I expressed that as I am still actively parenting 2 teens with Autism and this involves currently actually taking one to work each day etc, that I could really do with avoiding day to day yucky side effects which might make me feel low level crap all the time.
He is recommending Ocrevus - which is rather a surprise as I thought that due to cost this would only be available to those for whom other DMDs hadn’t worked (about £19k a year!!)
But he said it is 2 x year infusions with maybe a couple of weeks feeling awful but 90% of the time feeling ok.
He is finally referring me to MS Nurses and said I can still have final say on which DMD but he thinks Ocrevus best option. Bear in mind he is at a teaching & research hospital with a bespoke MS research centre , so wonder if I am to be a bit of a guinea pig???
I feel perversely relieved with my diagnosis. I think he had to tick and cross every possible box, as I assume he now has to apply for funding for Ocrevus and probably has to rove beyond all doubt that his diagnosis is correct.