Reading other people’s bogs has shown me how little I really know about what is going on with my joints… I know that the scans have been clear except from my Nuclear Bone Scan which was inconclusive because I was apparently still growing and an X-Ray of my foot which has shown that some bones have fused but that can happen without having bad joints, so may or may not mean anything. I know that I have some sort of antibody in my blood, and I know that it is the IgM whatever that means. And that is all I know, after 7 years, that is all I know.
I have no clue what my CRP or my ESR is or has been, I’ve been tested for lupus but I am guessing that result was negative because I have no heard back… And the test was over 2 years ago.
And do you know why I am clueless… Because my doctor doesn’t know what is going on, and because my physio doesn’t know what is going on, and the reason my physio doesn’t know what is going on is because of the lack of communication between her and my doctor. In fact my rheumatologist is pretty rubbish at communicating full stop… This is my most recent letter that I got from her almost a year ago…
That’s all I get, 2 lines! And that’s one of the longer letters… Oh and do you know why there was no inflammation? Because she scanned the ONLY part if my body that isn’t sore! When I saw her in December 2012 I was in the middle of a flare in my neck, and she decided that it was good to do an MRI on my lower back… That didn’t sound right so I rang up and checked if she really wanted it on my lower back when my neck was the problem, the receptionist checked and apparently she did want to look at my lower back. Now I might have missed something but last time I checked my neck and lower back were at DIFFERENT ENDS OF MY SPINE! But maybe she was checking for something else… Sacrolitis perhaps. Maybe she is thinking along the Seronegative Arthritis route? Maybe she is thinking along the Ankylosing Spondylitis route? But then that wouldn’t make sense if I have the IgM antibodies… Unless they just happen to be present? But it would make sense why (to the extent of my knowledge) my ESR and CRP have always been within normal range… Unless I just happen to be one of those unlucky people whose serology is always normal an it fluctuated between lower normal and normal normal?
I have so many questions that my rheumatologist IS going to answer in May!
1) Why is the communication between you, my GP, my physio and me so crap?
2) Why do I have to chase you up about everything? (Although I think that’s normal)
3) What on earth does a positive IgM mean? Is it IgM-RF (rheumatoid factor) like I’ve been lead to believe? In which case, why are you checking for sacrolitis?
4) Why has it been so long between my appointments? 17 bloody months that I have waited patiently!
5) Where is that physio you promised me 2.5 years ago?
6) How the hell am I going to get diagnosed when you never see me?!
7) Will you help me transition to adult care? I.e give them my notes, or will I have to intervene?
8) What have my CRP and ESR been every time you have taken them?
9) Why, in the last 4ish years I have seen you, have you only done 2 examinations?!
10) Will you prescribe me another NSAID that doesn’t give me headaches?
11) I have bursitis and inflammation of my ligaments in my knees, I can’t do exercise so it isn’t a mechanical injury, this points to autoimmune! Would you agree? And if so, does it point to Spondyloarthropathy?
I don’t think those questions are too unreasonable, and I know I’m not asking the obvious “what is wrong with me?!” But I really don’t think that I will be finding that out any time soon really… Unless something extraordinary happens and something shows up, I think I’m in for a long wait for a diagnosis… 7 years is long enough but I know other people who have waited a lot longer, granted they were on treatment, but I still think that I will get there in the end. And until then, I represent a lot of people who are struggling to get diagnosed, and that’s fine with me. That doesn’t mean not going to push for a diagnosis, but I have accepted that it’s going to take time…