Yesterday I had my MRI on my lumbar spine and sacroiliac joint which took 40 minutes! I struggle to stay still for 10 minutes so 40 minutes was horrible, especially because it felt like I was lying on a wooden board inside an oversized polo. Even though I had a pillow and I was reasonably comfortable at the start of the scan, keeping still for so long pretty much gave my joints a reason to flare so both hips, both wrists, my neck and pretty much my whole back decided that they were going to be grumpy so they stiffened up to the point where it was hard to put my shoes on and haven’t really stopped complaining since over 24 hours later.
I’ve been quite curious as to why my rheumy wanted me to have an MRI on my lower back for neck pain but I was thinking about it and neck pain is a sign of Ankylosing Spondylitis so I guess she is just checking to see if there is anything showing up in my back. I’m really hoping it isn’t AS even though quite a lot of the symptoms match my symptoms but I think it’s just a waiting game until the results come back. Thing is that AS doesn’t always show joint damage until the later stages and doesn’t always show up in labs so if it is AS I’m worried that it will be missed, but I’m quite confident that my rheumy is good enough to know this.
When I said my joints haven’t stopped complaining since the MRI, I wasn’t joking. I was sat in chemistry today and my neck was a worse than usual but the pain just reached a point where it was only just bearable. I’ve never actually had so much joint pain that its affected my blood pressure before but I really don’t want to experience it again… My neck got so painful that I thought I was going to be sick, I had that cold clammy sweat that makes you feel horrible and I was pretty much in the verge of tears. If someone was able to take me home right then and there I would have gone home.
My neck pain is still here although it is doing a lot better. I have no idea what caused it to get so bad since I’m not really able to bend my neck to look down at college work anymore so I don’t think it was overuse. Maybe it was just my neck deciding that it had had enough of being good.
Anyway I had my physio appointment today too! It was supposedly to be on my ankle but we cancelled that when she saw how bad my neck was. It was actually a really productive appointment and I’m really happy with the outcome.
I had my ankle X-ray done 2 weeks ago or so and even though I got the results by phone saying that there wasn’t anything significant going on, today’s physio decided to take another look. It turns out that I have a lovely circle of low density bone in my ankle which we are not sure is a problem or not. I have an Anteater sign where my metatarsal has fused with some other bone in my foot which I thought looked pretty cool but we also aren’t sure if this is a problem as sometimes it just develops, but even the physio was pretty impressed with it. I have an extra bone in my ankle which has a little bone spur on it but nothing big enough to cause me swelling and pain. And I also have some bone overlapping in my ankle. I thought that all that was pretty significant! So we have decided to get a second opinion on the X-ray and then we can decide a course of treatment.
We also discussed what had happened at my last rheumy appointment and the lack of communication between clinics. Apparently there is about to be some really big changes to the peds rheumatology clinic where my doctor is only going to keep some of her patients on and the others (probably me) are going to be sent to mobile clinics run by our regional hospital. At this point I asked if it would be better to move up to the adult clinic but my physio is all against that since the adult clinic is even worse. She has had patients who moved up and are just stuck in a circle of tests so I’m not going to move up yet.
My physio is also going to phone my rheumy tomorrow and ask what is going on in my labs since no one has a clue what antibodies I am positive for, nor does anyone know what my ANA, CRP or ESR is so hopefully I will know that by tomorrow. And my physio is going to ask about the indometacin (an NSAID like ibuprofen) I am supposed to be taking, apparently it was prescribed two years ago and it is on my repeat prescription but I hadn’t heard anything about it until my asthma diagnosis.
And regarding my neck pain I have a few mild stretching exercises and heat/cold treatments to do until we actually know what is going on in my blood and on the MRI. So hopefully I will know more about what is going on tomorrow. I finally feel like I am getting somewhere.