Can I still have arthritis with negative test results?

JellyEllie

Hey I'm Ellie, I'm almost 17 and I'm in the middle of investigations to see if I have juvenile arthritis.

I've been experiencing pain and swelling in both hands, in my fingers and thumbs and my wrists since I was 15 and originally put it down to repetitive strain from drawing and painting too much for my GCSE art coursework. My symptoms seem to fit the ones of juvenile arthritis and I've read that it might be triggered by a viral infection which might have caused mine since I've been to hospital for a kidney infection, then had another one and viral meningitis so maybe one of those triggered it? The swelling and pain don't improve with over the counter anti inflammatory tablets or painkillers like paracetamol so I'm taking Co-codamol now but it makes me feel too sick and drowsy to take before/during college so it's often painful then and weeks of rest and wearing my mum's carpal tunnel splints haven't helped.

I saw my GP in August 2014 and was referred to physiotherapy in September which did help slightly with the movement of my wrist but didn't help with my other problems which have since been getting worse. I went back to my GP again because the pain and swelling were continuing and were preventing me completing my college work so my GP sent me for X-rays and referred me to orthopedics. My initial X-rays were reported to show soft tissue swelling and periarticular osteopenia and were yet to exclude juvenile rheumatoid arthritis but when I saw the orthopedic doctor he seemed annoyed that I was there, didn't see any definite problems with my X-ray but decided to send me for more X-rays at different angles and seemed to take me more seriously after those.

Since then I've had a blood test which came back clear and an MRI which I'm not sure what the results are because after nearly 6 weeks of calling the office everyday we haven't been told what they did/didn't show. I also had an Ultrasound a couple of weeks ago which I haven't got the results for yet.

I understand that it's a lengthy process and it's difficult because I'm not a black and white case for anything but my next appointment is a review appointment in June unless my Ultrasound results change that and I'm worried about waiting until June because that's the end of the college year and I've barely scraped passes on my work, my teachers are frustrated even though I have no control over what's going on and when my flare ups happen, I still haven't passed one of the core units that are required to continue on the course because I can't hold the tiny oil pastels and I'm also very aware that my poor grades this year will drag my grades next year down which could ruin my chances of getting into university.

I just don't know whether to try and see a local early arthritis specialist to get a second opinion because my current rheumatologist seems to just want to leave me to my own devices until he can diagnose me and that's not an option when it's affecting daily life. Also I think if I keep bothering him about my diagnosis the next step he'll take is to organize steroid injections into my wrist and while I'd do anything to be able to draw again I don't want to go through that and risk it not working and holding me back from my work for longer especially when it's affecting both my hands so it seems unlikely that it's a tendon problem and I'm pretty young for carpal tunnel and I would have thought the splints would have helped if it was that. Even if I did get the injections, without a diagnosis my teachers would still be on my back asking what is going on and I wouldn't be able to explain my poor grades if I'm still a big question mark.



You can see from the picture that my hands don't really swell around the joints so my doctor says it isn't what you typically see in arthritis it's more like my whole hand swells so it seems unusual and I get nervous speaking to the doctors and trip over my words so I seem really unsure about everything I say. They're getting worse and worse each time, my fingers are tingling, turning ice cold and I'm starting to get dents in my nails like someones tried to chip a hole in them and the skin under my nails are a kind of reddish brown colour that I can't clean off no matter what I do. My feet are also starting to be a little painful when I walk and I really don't want them to go too.

So really all I'm asking has anyone been in a similar situation and do you know if it's possible to have juvenile arthritis with mostly/all negative test results? Do you think it's worth me looking into getting a second opinion? Or if you don't think it's arthritis do you have any other ideas of what this could be?

Sorry this is a long rant and thanks for reading it if you made it to the end!

dreamdaisy

Hello, I have made it to the end but am having a rough day and have to cook. I will reply better tomorrow. DD

JellyEllie

Thank you very much! I hope you feel better soon!

dreamdaisy

Right, good morning! Firstly I have to say that I am not a young person - I used to be but the years have passed. I do, however, have a form of auto-immune arthritis which is sero-negative, so I hope to pass on some useful information.

There are many kinds of auto-immune arthritis so narrowing which one may be happening can be a lengthy process. The sero-positive ones are the kinds that show a positive RF in the blood results, RF being rheumatoid factor. I have psoriatic arthritis (PsA) which is a sero-negative form, i.e. there is no RF present in my bloods. There were other signs though, namely very high inflammatory markers. They were the measures of CRP and ESR (I can't remember what they mean) and at their worse they were in the high 160s (they're meant to be below 10). For a few years I bore the label of 'unspecified inflammatory arthritis' but it wasn't until my skin helpfully obliged with a bout of psoriasis that the medical penny dropped - the treatments, however, remained the same.

Now, I am not suggesting that this is what you have - I may have arthritis but I am not a rheumatologist - but my form of arthritis traditionally begins in the small joints of the body, such as the fingers and toes. Mine didn't but that's neither here-nor-there. You mention pitting in your nails which is another indicator of PsA. I don't understand why you have been referred to orthopaedics but there again I was: I needed an ortho operation to remove five years of current and solidified fluid which had gathered above my left knee joint and the first rheumatologist I saw dismissed me as not belonging to their gang. I proved him wrong.

I have had many steroid injections into my knees, usually after they've been drained of excess fluid, and none of them worked. The only effective one was in my right ankle and that was for my osteoarthritis - for what it's worth I think you are wise not to have one done because they don't always work but, on the other hand, you are at a crucial stage of your education and this problem is having a huge impact on you. 'Wait and see' is not an appropriate answer, neither is doing too much research on the net, but please have a look at what constitutes psoriatic arthritis (mine got into its stride without the skin trouble) on a reputable site such as here or NHS Choices and see if this might apply to you. I agree that the swelling is not around the individual joints but your hands are obviously 'unhappy' - there is something amiss in there and there's no doubt you need answers. Some on here soak their troubled hands in warm water, with some added Epsom Salts - this may provide some short-term relief. Are your hands hot-to-the-touch?

When I am due to see a doc or GP I make a short list of my questions, and make hasty notes of their answers. I find that keeps the conversation on track. I also take The Husband with me, whenever possible, because another pair of ears often picks up on things I miss (my concentration is pants due to pain).

I am sure answers will be found, and hopefully sooner rather than later. You seem to have a level head and to be a sensible girl so I hope I haven't scared you with too much information about something it might not be. :oops: DD

PS I hope you have a pleasant Easter.