I had my second Rheumy appointment today. It would be an exaggeration to say I prepared for it like a job interview - I stopped short of a powerpoint presentation - but it felt a little bit like that: much at stake and they don't come around very often. I did go over and over the key things I wanted to cover though, even to the extent of practising asking the most important questions without waffling. My husband came with me and he was on the money too.
Last time I saw a locum Rheumy and this time the new permanent consultant. At first the consultation seemed to be going down the route of a discussion about Methotrexate and steroids. All useful stuff in theory, but nothing I didn't know and the clock was ticking.
My one main concern was that I appear to have sustained significant, permanent damage to my knees in a three and a half month period. I know this because I was x-rayed in the Orthopaedic dept. at end of February: no real damage to weight bearing joints, just the patellae and then again in Rheumatology in early June: significant loss of cartilage and erosion of bone. I told the Rheumy this and that I wanted him to compare the 2 x-rays.
He got them both up on screen and hummed and haaed a bit about how they were like two different photos, making things look different because taken at a slightly different angle etc. And then he conceded that they were, though, very different and that, yes, the damage had happened very quickly indeed. Things seemed to change from that point.
The upshot is that he stopped trying to tell me that it doesn't really matter what sort of inflammatory arthritis I've got because the treatment for most types is the same. Instead he quizzed me more closely about the collapse I experienced back in May and started to consider possible diagnoses that might explain such an aggressive episode.
He mentioned the possibility that I might have had an infection and that what has happened to me might be a one-off episode. At that point my husband jumped in and asked whether Lyme Disease might cause such an infection and the Rheumy said it might be one explanation.
I've been tested for Lyme Disease now, I've had more x-rays (which was not on the agenda at the beginning of the consultation), he has promised to send me for an MRI scan if my knees have deteriorated at all and is going to see me again in 8 weeks.
I'm very happy about all this. I'm sick to the back teeth of the assumption that I have RA or something like it and that's that. I know that my symptoms probably add up to that conclusion but also that there are some things going on that might suggest another explanation. Lyme Disease is a very important one to rule out if only for the simple reason that MTX is not the treatment for it, antibiotics are.
I feel that I had to lead this consultation to an extraordinary degree. The Rheumy seemed very good: able to engage with me as a patient, to think really quickly and clearly about how best to proceed and a nice person to boot. But he hadn't even compared the two sets of x-rays in between which I'd had major signs of disease activity. And it was doing that that changed how he was thinking about my illness.
I think we have to be assertive about what we need and want from the health service. The NHS does some things brilliantly, there are some great people working in it but as patients we are always up against serious time and money constraints. I allowed myself to be fobbed off once and that seems to have cost me dear in terms of my mobility, it's not going to happen again.