We do do tests to decide which sort of arthritis it is as well as to exclude other conditions. So there’s usually a case of doing some blood tests and if necessary x-rays. X-rays will not show arthritis as such. If they’ve had joints, pain for a long time or arthritis, uncontrolled arthritis for a long time, x-rays will show unfortunately changes, but x-rays are often done to rule out other causes of joint pain and , but usually that combination of blood tests plus or minus some x-rays will have the diagnosis and either the young person will get that diagnosis in the first visit or then return and be told that diagnosis and given the opportunity to ask questions, you know get information , written information about whatever type of arthritis it is as well as meeting the other members of the team and that will be the nurse specialist, the occupational therapist, the physiotherapist and to learn about what rheumatology teams can do for young people with arthritis. Now as I say the experience will vary according to the clinic but that would be very standard practice in paediatric rheumatology clinics.

To begin with I had blood tests and needless to say my first blood test was quite eventful. It was just awful, it just, you know the feeling you get after? Some people may or may not be able to agree with this but I always feel dizzy as thirteen, getting my blood taken for the first time, needless to say it was a bit traumatic. X-rays I had to go for I think within that, I went for about ten, eleven x-rays on different occasions. I actually went for two MRI tests and they, they did numerous things. They grabbed my ankle, one of them actually suggested opening the ankle, you know, operating on the ankle because they were convinced it was a, a tendon that was too tight and that was; and they said they’d cut loose but nothing really came to be until again I’d visited my GP. She recognised, she was friends with the consultant and I think that’s why she was so aware of it and she referred me and then since then I’ve had blood tests again to look at the inflammation markers. I’ve had the ultrasound scans on all my joints and that happens every time you go for an appointment, it’s the best way for them to see if there is any inflammation in a joint. I’ve had CT scans, DEXA [bone density] scans, I’ve had quite a lot. Quite a lot of scans but the one that really is vital I think to a doctor for you know, arthritis is the ultrasound scan because they can show the patient and the parents what it is that’s there, why you’re feeling your pain and kind of because I’ve been told for so long, "No you’ve nothing, you know, it’s a sprain, it’s, you know, your ligaments," and then to be able to see on a wee screen, yes there is an explanation to my pain, to the reason I feel like this it’s just quite nice as well.

The musculoskeletal specialist gave a physical examination, so he just tried to find where places were tender in my neck and in my lower back and they did an MRI scan over my neck where the pain really started. But with rheumatology it was a lot different. While they still had tests in place of the blood tests and scans they had they weren’t so much concerned with physically finding where the pain was because they knew they could find that from scans a lot more and they knew it wasn’t just a mechanical problem. It was an autoimmune problem, so really having a physical examination was not as useful.

Did they tell you what was going on during the examinations?

In what sense?

Well, did you know what the consultant was looking for?

Oh, yes, they told me that they were looking for signs of inflammatory arthritis because that is the main kind of arthritis that would be characterised with younger people as opposed to osteoarthritis.

Okay then and do you think that what they deal with it well? I mean were you happy about the kind of advice that you were given?

Yes. I the rheumatologists at the hospital were really helpful. They tried every way possible to try and confirm a diagnosis as quickly as possible because they knew with the nature of the disease a long diagnosis is inevitable. But it was just making sure that that diagnosis period was as short as they could but in the kind of constraints.

So you’ve mentioned some of the tests that you had. I was hoping perhaps that you could talk about more about the kind of tests you’ve had done, a kind of general summary until we got to your diagnosis.

Yes and so they had a look for inflammatory markers in the blood. they’re usually present if there is inflammation there and they were always negative for me so that was the main reason why doctors seemed to go away from the idea of AS because it is an inflammatory illness and if there’s no sign of inflammation then you wouldn’t suspect it. X-rays, they were they were to look more for signs of fusion that would come around from AS but they were obviously no use because it was relatively early onset so there would have been no time for that yet.

And also I had contrast MRIs which were kind of the breakthrough for my diagnosis because they were able to kind of highlight on an MRI so they would just light up when you see them and it would just became clear to doctors that this was what was happening. There was inflammation.

I’m a terrible patient and I was going mad when I was told I had to have blood tests cause I’m not too keen on needles. But I just sort of sit there, just let them do it so then it’s over quickly. I don’t know, I didn’t at the time know what the blood tests were showing, but since having methotrexate they have to do sort of six weekly, eight weekly blood tests, and you have a blood card and you record it, and you know what, and I know what the stats are for. So there’s like two for information, some for platelets, white blood cells, and all that sort of thing. And they even show if I’m getting a cold and you can tell just by looking at the numbers and the change.

Wow I didn’t know that. So are you quite, so you can monitor your own blood?

Yeah

In a way?

Yeah, kind of yeah. And my information at the time, one of the stats was something like 40, and it’s now less than 5, so it’s come down quite a long way since going on methotrexate.

So okay then. Did anyone teach you to read those blood charts?

Well it’s just like you have labelled at the top and it just has the number underneath it, then you can just look down the columns and you can tell which is which.

And there’s like guidelines what they should be in between. So that you can tell if they’re good or not, just by looking at that.

They just; I think they had something as well to do with waves, like some weird wave thing and yeah, but you normally have x-rays for like broken things so that’s why I was wondering why am I in here because I haven’t broken my hip and . So everyone else is like in casts and that so I thought oh well, I thought that they were just for broken things. They didn’t really explain to you, they just go, "OK you’re going for an x-ray, you’re going for an MRI." They don’t go, "Right what you do, you sit down, you lay back, they’re going to put something over you, they’re going to put boards underneath you, they’re going to move this light around, your laser on your leg." They just go you in the MRI scan and then they leave you to go with a doctor or the person that pushes you around and they push you to the thing and yeah.

OK another imaging that young people may come across is our DEXA scans which measure the density of their bones, so basically the strength of their bones and it is knowing that in juvenile arthritis and indeed any arthritis affecting young people there is this added risk that they can get thinner bones. You build your bones until your mid-twenties. After that that is as good as you’re ever going to be so it’s a really ideal time to keep the bones as strong as possible and we know that, certainly in juvenile arthritis, they carry a risk of, an increased risk, of getting osteoporosis. DEXA scans are the way of measuring how strong your bones are. Again it is important particularly for the younger
nder eighteen year olds, that it is done by a paediatric service because interpreting DEXA scans in the growing skeletons are different to interpreting them in an adult, and you have to use different ranges etc. In some places they’ll be routine, in some others they won’t be routine and will only be done as required but they are a very simple x-ray, type x-ray – it takes I think about ten/fifteen minutes but relatively easy to do, no injections but it will measure how strong the bones are.

Ultrasounds are also used diagnostically and again it’ll vary from area to area as tof you have very good access to MRI scans, MRI scans tend to be used and ultrasounds not. In other areas MRI – waiting lists are too long and ultrasound is used. Ultrasound is a much more dependent on the person doing it. So it does tend to be certain centres where they develop the skill to look at others particularly in smaller joints. So the younger the child, the more skilled you have to be as an ultra-sonographer. But it is very useful to determine whether there is inflammation or not in joints but it will vary from area to area as to the skills of the sonographer so some people will find they have more MRIs and some more ultrasounds.

Do you have any other tests like MRI or did you have ultrasound or anything of that nature?

I had ultrasound on a lot of my joints and she like moved my joints around, had like a feel of my joints and just yeah.

They put a gel on the joint or whatever you’re having x-rayed, ultrasound and it’s just sort oft looks almost like an electric shaver but it doesn’t hurt, they just wipe, just rub it across your joint and it shows, you can, she showed me the screen and you can see the inside of your joint with all the muscles and all the; and you could see, for the arthritis you could see the fluid in the joints which is, it was, it was like different coloured dots and the more coloured dots you have, the more fluid it was in the joint. So that’s how he knew.

But an MRI, I think in the lastf I think about the sort of revolutions in our specialty, MRI is one of the big changes in the last five to ten years of imaging arthritis. So as Ix-rays only show the bones, they don’t show anything else so they will only show if the arthritis has caused any damage to the bones. By the time that happens that’s quite late. MRI is, shows you everything. To do an MRI looking at arthritis a young person will need an injection of a dye called gadolinium and that will show up the actual inflammation in the joint. It will also show the cartilage lining the joint, it will show the bones, it will show the tendons – so very, very informative. And the MRI scans are particularly useful in certain areas of the body, so your hips, because you can’t see any swelling in hip arthritis; in the jaw, in TMJ arthritis – again you can’t see any swelling, and it will tell us whether the pain in the jaw was due to mechanics of pain or due to inflammation in active arthritis. And some of the hips, ankles also, the subtalar joint which is the joint underneath the ankle – difficult to see sometimes swelling within that, an MRI scan is particularly useful. So we areit picks up arthritis a lot earlier and we are doing it more often so young people may have that experience of an MRI. Having it , the issues mainly that the young people tell me is very noisy, it’s not an x-ray, it’s a magnet but it’s very noisy and it’s advisable to take some of your own music because it’s also very boring because you have to lie still for twenty minutes or so, so the young people do tend to prefer to take their own music and lie there as long as it’s not too much and they start dancing. But yes

When it comes to the MRI did they tell you what was going on and why?

No. All I really remember is so noisy and I had to sit on the bed for half an hour listening to music behind loads of windows in glass and whatever, it was a full body one. Yeah that’s all I really remember, I just remember it was like a tube, felt like I was going in like the Tardis or something because the noises.

What did it feel like?

I couldn’t feel anything but they said there was something out on the lines of not nuclears, something like some waves that go through your body from this tube where you have to lay on the bed and it shoots. Yeah and there’s some waves that were going round the room, that’s why they had mirrors and glass, yeah.

And did the people tell you what was happening during the MRI? Did they talk to you at all?

No I couldn’t hear them.

And before the MRI did they explain what they were going to do?

I didn’t really know, no. They were just like , "You’re going for an MRI scan," and if I was at home I would have like researched it up and that on the internet but I didn’t have a clue really what it was until I got to the room in the wheelchair, looked at the MRI and I though whoa, it’s like a huge machine And they were all like, "Don’t move," and there’s about five doctors and a couple of nurses, they were all like, "Make sure you don’t move, listen to your music, don’t take it off," and I was just like yeah and then I went into the tube and couldn’t feel anything and that I think was even worse when I came out because I had to like lay on the bed, a wooden, well it weren’t wooden, the thick plastic, not even cushioned or anything. Yeah I listened to some rubbish music.

Was it painful then laying down still on these beds?

Yeah

Yeah?

It always is in like assemblies and that. All wooden and cloth chairs but they don’t; Miss said that she’ll email around the school again telling them that about how the arthritis, because we hate to be. I can never like sit on a chair for ages and they think I’m just fidgety but it’s not always because of that it’s just because I need to move. Because if I don’t move then I’ll be like stuck really.

They made me leave them to go into a room and have a proper poke around my knees. And then they said, We’re going to inject them So I was like Oh. No thank you And they’re like, We really recommend, it would help such a lot So through a little bit of coaxing they sat me on the bed, they got out this great big needle, they said that the only, the only one that would fit was the biggest one. And I was like, Ooh, must be really swollen then So they got out these needles and there was a lot of hand holding from my Mum thankfully, she was there for me. And she just sort of put it in, and immediately I could feel the pressure being realised. And she said it was squirting out apparently, which isn’t really nice to think about, but it shows how bad it was. I mean if the fluid’s coming out of your knee that much it must be really bad.

So she took some fluid out and then put some sort of steroid thing in, and that was to help, help me in the future, it was supposed to stop it getting inflamed straight away again. So I found that really valuable.

I wasn’t allowed to walk for the next day or two I think. So then I got back to my bed. I stayed over at the hospital I think I went home the next afternoon.

Scary. I can remember wanting my Mum with me but because lots of things were radioactive stuff, she had to wait outside. I suppose it’s scary for anyone but up until the time I started having my fits I’d been really well. The only thing I’d ever had wrong with me was asthma and like I’d never had blood tests or anything before, so just suddenly having that and my experience of blood tests at the hospital when I first had them were atrocious. They got blood on the floor and they bruised me oh, it was horrible and I think just my first experiences made everything else so much scarier. So lots of the other departments where I had all these tests like the MRI scans and they like sat down and they explained to me what was going on and I can remember like having like a buzzer to press when I was in the MRI if I got scared and they were really nice. But still scary when you’re young and you’ve never had to have anything like that before and when you don’t know what’s wrong with you I think it’s the not knowing part which is the most scary.

Did anybody tell you what the tests were for or what was going to happen before the tests were conducted?

Didn’t tell me what they were for as far as I can remember. They might have told my Mum especially obviously when I was in the children’s wards before that they probably did tell her. But no I can remember like getting to like something like the MRI scan and them saying, "We’re just going to put you through this tunnel, if you need us press a button." They were kind but they didn’t really go into too much detail on what was happening and why they doing it.

I mean I don’t want to put words in your mouth but would it have helped if they did explain more?

Oh yeah definitely. I think just maybe, the doctors and things saying, "Well we’re not really sure what’s wrong with you, we’re going to do this test because it might be this, it might be this. When you go to the test I’ll explain to you what’s going to happen but it’s not going to hurt or you might feel a sharp prick or something like that." Just give me an indication of what to expect of it would have helped.

I just knew the x-rays were obviously to assess maybe the damage in my joints. So to see which areas had been affected. Like I knew the blood tests were to check whether the medication was having you know an effect or not on what my sort of you know rheumatoid factor levels were, if my red blood cell count was high, if my white blood cell count was okay, if my liver was, you know my liver was fine. I knew all that and I knew the bone scan was to sort of, I think it was to check my density, my bone density.

So yeah but that was obviously because I’d had someone explain it, and I obviously asked my parents questions, you know, Why am I? Why am I getting this done or something like that, but you just get into the routine of it, like I’m so used to having blood tests every six weeks, or six to eight weeks now I don’t even think anything about it. I’m so used to having an x-ray that I don’t think anything of that as well. So I didn’t ever find it really sort of scary