Brief outline: female, 40, diagnosed April 2001 (first relapse December 1999) Started on Rebif April 2004, pottered along quite nicely on that but switched to Gilenya in May 2013, following my first MRI scan since diagnosis, due to two relapses in 2012.
I think it’s fair to say Gilenya has been a complete disaster for me. Currently experiencing my fourth relapse on it. Saw a neurologist in January 2014 (not my actual neurologist who I’ve only seen about twice in nine years - like I said, Rebif worked well so there was no need for me to see anyone) who ordered a new MRI scan and said she would refer me to Addenbrookes to be considered for Tysabri whatever the results (new activity or not) as there was nothing further my current NHS Trust could offer me. We agreed that Gilenya was not working for me. She stressed that I would have to make a real case for myself at Addenbrookes and pretty much implied that the relapses I’d had didn’t really count as my vision or walking weren’t affected…? Following this, she wrote to my GP, copying me in, but didn’t really make much of a case for me at all - she used the word “mild” twice, talked about how the relapses were all sensory, all tests she did were fine (I’m still walking unaided and have never experienced weakness in limbs) and how none of the relapses had been treated with steroids (this is a concious decision on my part as they don’t work for me and just make me fat - I’m not vain, I take other weight gaining medication and I’d just hit my target to lose nine stone at the end of 2011 which has all gone to shit now but there you go)
I had the new MRI scan mid February 2014 but had heard nothing despite me leaving messages for my MS nurse. I had a six month review pencilled in for Thursday (not made to discuss results, next steps etc) and I had a long chat with my MS nurse then. The new MRI results show no new activity however, given the amount of relapses I’ve had, something about Gilenya is not agreeing with me and she said she would speak to the neurologist I saw in January and get me referred to Addenbrookes as a matter of urgency (she seemed annoyed that my scan results hadn’t been followed up on) It was left that I should expect a letter from Addenbrookes. I went away feeling both happy and relieved.
Then yesterday, I received a voicemail from my nurse (missed the call as I was alseep and it came through too late to call her back) to say she’d spoken to this neurologist, she agreed to me stopping Gilenya (which I’d already done on Thursday as agreed with my nurse) and that they were happy to offer me Rebif to “cover me” whilst I waited for an appointment with the neurologist to make a “proper plan” which would be May 2014 at the earliest!
As you can imagine, I am really, really unhappy about this and I had a nagging feeling this would happen when I saw the letter she wrote to my GP. I feel like she has totally gone back on what she agreed in January and now I’m having to wait yet another month to get something sorted out. I also know she is not going to agree to refer me. And what is the point of offering me Rebif for a month when it takes at least three months to kick in (well, it did for me) and I came off it because it had stopped working?!!
Anyway, I e-mailed an MS buddy who is pretty clued up on this kind of stuff and she gave me loads of information about patient rights including a leaflet about self referral which included the details of four MS nurses in the Cambridge area.
I really need this Addenbrookes referral as I feel I have deteriorated significantly over the last two years, no matter what the MRI scan says, and I have to get my life back. I’m so far down the line now (fourteen years) that I don’t feel there is any point in going back to first line treatments. From June 2010 to December 2011, I lost nine stone, I was doing pilates three times a week and had even joined a gym to do yoga and pilates there. No relapses. Relapsed in January 2012 and it’s been downhill from there. I’ve hardly worked this year - maybe about four weeks in total - and I’ve not even been out of the house much. For example, I should have been at the Grand National today (a lifetime ambition) but had to sell my tickets a couple of weeks ago as I knew there was no way I would be up to it. Myself and my partner have aready taken the decision that I’m going to leave work later this year - I would do it now but our lease isn’t up until November and we need my money. As a result, I’ve also had to decide to leave my lovely flat in my lovely village to live in my future FIL’s crash pad (in an area I hate) because it will be rent free and reduce my OH’s travel costs significantly - it is the only way we can balance out losing my money until some debt have is paid off next year. I have always been very positive about having MS, right from diagnosis, but the last two and a half years have, quite frankly, been utterly shit.
So, do you think it’s out of order that I try the self referral route? Has anyone done this? How successful was it?