Hi guys - I've been a forum member for a while, but haven't posted much as I'm undiagnosed so I don't really feel knowledgable about anything here. But I wanted to share my recent success at finally getting a referral to somewhere which might be able to help me.
I came across an article on the ARC website a while ago - about enthesitis. As I read the article it felt like they were talking about me - long-standing pain in multiple joints, family history of inflammatory arthritis (mum and grandmother with RA), rheumatoid factor and anti-CCP both negative, consistent moderately high inflammatory markers (but not high enough for them to consider RA), calcific tendonitis (shoulders), difficulty getting a diagnosis as nothing seems to show up on X-rays or scans.
Anyway, my usual GP is on maternity leave so I went to see the locum GP. Would you believe it, his Masters research was on .... enthesitis! And he did this research at the department the article's main author is at. He agreed with me that what I had did sound very much like enthesitis, and he's referring me to that world class research-led rheumatology department. He was amazed that I had such a long history (nearly 20 years) of undiagnosed joint pain, and looked most annoyed that my continual red-flagged inflammation markers had been ignored.
Honestly, I feel like all my birthdays have come at once! Finally, I might be getting closer to (a) a diagnosis (other than my current one of fibromyalgia, which I'm sure it isn't) and (b) some treatment (which seems to be much the same as the treatment for RA, from what I've read).
Anyway, I just wanted to post this so that anyone else who is undiagnosed but feels sure there's some kind of inflammatory arthritis going on realises that there IS hope. Even when it seems no-one will listen to you, there is every chance you too might find a doctor who will.