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Me and Mrs Jones

Well it’s nothing to do with her actually but about me and my neurologist. I had a routine appointment this morning. We now meet up at 6 month intervals rather than the 3 we used to do. She spent 40 minutes with me. I feel so blessed to have a great relationship with her. Mind you, I don’t have her on a pedestal nor am I in awe of her and her qualifications. I am forthright and speak as I find. I can’t help feeling she finds me somewhat amusing or entertaining. Anyway, I digress. She opens our consultation as normal with the usual “tell me what’s been happening”. I replied “I’m fine. It’s all the others!”. She asked if my cancer treatment was finished and discreetly made notes. I then bombarded her with questions and queries. Can i be prescribed Sativex? Can I get Ocrevus? Can I go back on Tecfidera? Are there any flipping trials I could be enlisted on?! The answer to all of them was no. I explained that my brain is fried from research of the various drugs at this stage. Her patient explanation of the reasons for the negative response was interesting. Ocrevus isn’t licenced here in Ireland yet and not considered financially viable and from her discussions with other people (medical and patients elsewhere) the jury is out on the actual effectiveness of Sativex. She discussed my recent cancer treatment last year and told me Ocrevus would not be prescribed to me anyway. She has had meetings with the company itself, and the company have said not for cancer patients. Same with Aubagio aparently. Even Tecfidera are now undecided about this. Copaxone is it seems the most suitable drug up there with the Biggies, but of course only for Rrms. We are in no doubt that my ms is Primary progressive. I asked about the FES. She reinforced what the senior physiotherapist told me last week. Not funded here by the HSE(NHS) and having a patient on file who trialed one,they were both of the same minds. It works by an electrode to stimulate the nerve but the problem is from the brain. Even if we could afford it, she wasn’t very convinced it was a good solution for the problem. She knows the company involved with Tec are in discussions as to the agreement of suitability for cancer patients. I’m booked in for another scan and will see her again in june. We’ll discuss the possibility then. I’m back there next week for orthopaedic clinic. Investigating my arthritis in my knee. When it locks and causes excruciating pain, it isn’t helping me dragging my leg behind me, as I haul myself along with the walker indoors. She advised me what terms to use in with the consultant, so as not to be dismissed as it “being the ms”. I’m there tomorrow too. Another session with the physiotherapy lady. I think I should be allocated my own parking space!

Hi Poppy

If Copaxone is ruled out as being ‘only for RRMS’ (in the U.K. too, although my new neurologist is applying for it for me - we’ll see if that works!), why isn’t Tecfidera ruled out too? In the U.K. that’s only for RRMS too.

It’s a bugger about the FES, it might have worked.

And I agree about Sativex. I don’t think it would help either.

It appears you are lucky with your neurologist. She sounds like a keeper!

Sue

Sue, my head was buzzing with the conversation and the length of time I was in with her! I think it was to do with the immuno suppressant effect and the getting cancer…? Copaxone company haven’t said no. Ocrevus have said no and Tecfidera are still in discussions about it. It made perfect sense to me at the time anyway. I think because I’m so desperate to feel I’m "doing something, pending the next scan results, if there’s visible activity maybe rrms won’t be dismissed? She’s definitely a keeper and my kind of woman. Plus she’s the only one covering these two counties. I intend to badger physio tomorrow and get contact information for the fes here in Ireland. I’m hoping to convince them that they need to let me trial one,then they can make even more money as I extol the virtues of it to the masses!

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If there’s current demyelinating activity going on then you might have your diagnosis altered to Progressive Relapsing. (Which is what mine is now called.) The problem with that (in the U.K., perhaps different in Ireland?) is that for PRMS, only Betaferon is given the green light by NICE. Which I can’t take. And of course (that was initially written as ‘curse’, maybe more appropriate!) you have bloody cancer to be considered too.

Sue