Good morning everyone, I have not been on here properly for a while for different reasons. I hope everyone is as well as can be.
I finally got to meet a really nice rheumotologist on the 18th of Feb. He was keen to know my history and he wrote it all down. I'd written it all down to avoid forgetting anything and I broke it into chunks to keep it as clear as I could.
I referred to some pain as alien pain and I think it was very helpful because it was a name I gave to the pain in my ankles in my twenties. I mentioned that I can remember limping pushing my pram. I told him now I'm older there are more things going on but that alien pain is still there.
His main comments were that he wants me to have an MRI scan. Straight away I felt a huge sense of relief. He looked at my psoriasis. he checked my nails but not with a magnifying glass as I know someone else did. I told him I had a very yellow, thick and strange little toe nail I had no swelling for him to see but tender areas. He said I could have one of the inflammitory serenegative arthropothies (if that's how you spell it). He also said I am very complex and he wants to see mainly what is going on in my si joint. He also suggested that I have fybromyalgia because of certain trigger point pain but almost certainly enthesitis.
I had more blood tests done and he wrote Psoriasis ? on them both My last lot of tests were the usual blood tests that doctors request and they were clear. He must have had access to a lot of stuff because he knew I had a nerve conductor test many years ago.
Lots of things were said anyway and he wrote everything down including some mechanical issues as well. He has a lot to think about, so I hope he is good. My scan date is the 13th of this month. I have to leave now as my shoulders and shoulder blades are starting to hurt. My spine is extremely sensitive to any bad posture and I am constantly moving and doing physio and avoiding positions. Bye for now. I will be back on in a few days time .
Don’t let him pin fibromyalgia on you unless you think it is appropriate. There is a post that was recently put up comparing tender points to entheses and there’s a lot of overlap. What is he hoping to find with the MRI?
Good work, you! This has every sign that you are being taken seriously, NanaL. I’m with Stoney, though: don’t be fobbed off with the fibromyalgia thing if it leaves anything unexplained. Fibromyalgia is very real, and people really do suffer from it, but it can also be a diagnostic cop out. And once labelled with that, it is difficult to get much in the way of treatment that will actually help you, if you have symptoms that are not explained by fibromyalgia diagnosis.
I don’t know, but I am guessing that the rheum is thinking that your back pain may be originating in the SI, and that if it shows signs of inflammation on the MRI it is more evidence that there is more going on besides fibro. And someone more knowledgeable than I am correct me please if I’m wrong, but I believe that PsA affects SI joints in distinctive ways.
The fact that he is floating a diagnosis of “seronegative inflammatory arthropaty” as a possibility is a good sign that he is investigating and considering everything. (PsA belongns to that group, by the way.)
Has there been any talk of your going to a dermatologist to have them look at your skin and nail issues? Did you tell the rheum about your horrible psoriasis when you were younger?
All in all, I think you’ve got a great start here, Nana L. Well done!
Grace, I think it’s quite normal for rheuatologists to do x-rays, at least with a new diagnosis so that they can look for damage. I had a foot MRI as well. Then I switched doctors, and that rheum wanted x-rays. I think it would be reasonable for you to ask your rheumatologist for x-rays of at least your hands. They can tell a lot from those.