Today I finally made progress with whatever is going on with my joints. I got the letters that my rheumatologist has sent to my GP, only 3 of which I actually received.
The letters said that she was looking into Seronegative Arthritis in November 2010 because of “gross restriction” in my lumbar spine. She also ordered my HLA-B27 but unfortunately the result is not in any of the letters so I am going to assume it was negative, although I shall ask my Rheumy about this in May. However, my Rheumy did find that my ANA is positive, but that this may not be significant.
Although my Rheumatologist did say that she expected me to be extremely hypermobile but when she examined me she found the opposite, and in fact I am incredibly stiff. She found restriction in all of my joints including the joints in my mid foot which may have been the start of when the bones in my foot fused. But all that was back in 2010…
In 2012 my Rheumy found “gross restriction” in my neck, which was no surprise since I was in the middle of a flare and could hardly turn my head. And as it turned out my ANA was still positive so it wasn’t a fluke. However, this is slightly confusing because I read on the computer (okay, I sneaked a look at the computer when my doctor went out of the room) that my IgM was positive… But none of this is in the reports.
Another thing that is missing from my rheumatologist is my ESR and CRP results so I have no idea what my inflammatory levels are, I don’t know whether they are usually low and are at the higher end of normal when I flare. However, I have since found that you can actually request a copy of the blood tests to be sent to you, so I am definitely going to do this when I see my Rheumy.
The results of my scans are written briefly, which I’m not too happy about either. There are no mention of comments from the radiologists… And surely, since my foot has fused, something would have shown on my Nuclear Bone Scan? But nothing was mentioned…
The last letter was from my Physio to my Rheumy, asking her to see me. It talked about the pictures, I had shown my physio, saying that it showed that my joints were red and inflamed and it also said that my joints were tender and movement was restricted.
There were more than 3 letters but they all pretty much said the same thing, although one did suggest that my Rheumy was looking more into the possibility of Lupus rather than inflammatory arthritis. However the letter after that one didn’t have any mention of lupus so I guess they discounted that?
On each letter there is a section for diagnosis, and mine says Arthralgia (joint pain), morning stiffness and ANF positivity (which I presume means a positive ANA. But I’m not entirely sure what the “F” stands for, maybe Factor?).
I thought that these letters would help shed some light things, but in actual fact if has just confused me more. It’s pretty obvious that my Rheumatologist has no idea what is going on, and neither do I. I’m beginning to think that my Rheumatologist was right about me being a medical mystery. But I really hope that my new symptoms, namely swelling and ligament involvement, will help with the diagnosis process. None of the letters mention anything about costochondritis or bursitis, which I have definitely mentioned to my Rheumy before, so that is definitely also going to be mentioned in my next appointment.