Hi,
I am posting because I am really confused about what is going on and wanted help from the experts, which from my experience of epilepsy, is often the people who suffer from it (though I know none of us can offer true medical advice).
Sorry if this is long but I just wanted to give the whole context. I developed upper back pain in 2014 and in 2016 I developed terrible pain in my lower back, coccyx and thighs. A scan revealed that I had a disc protrusion in my lower spine and a flat back. I had a few flare ups and my life was impacted but the pain fluctuated rather than being constant.
Fast forward to the summer of 2018 and a lot of heavy walking in Paris on holiday, and I developed sharp pains in both my hips/thighs which later also led to dull pain and soreness. I was told it was bursitis and it would disappear in two weeks -it didn't. Had an MRI in Feb 2019 which showed inflammation in the tendons - I was told it was Tendinopathy and it would go away. Fast forward to 2020 and it hadn't gone (though it had improved). I also had developed bad pain in my coccyx (more in the context of sitting for too long) which I at first put down to my disc but it was atypical in relation to how it had been previously (only tended to get the occasional sharp pain since 2016). Saw another rheumo in 2020 and he advised that he thought it was psoriatic arthritis and that the coccyx pain was maybe part of it.
Now getting to the main point of the post - I had an MRI on the coccyx, spine and sacroiliac joints and it showed nothing atypical beyond the already identified issues with my spine. I suppose, what I wanted to ask, is how critical is an MRI to diagnosis of psoriatic arthritis? I am starting to wonder if I have been misdiagnosed. As regards the pain in my hips/thighs now - I get the occasional sharp pains and soreness and the area is still tender to the touch. But the MRI being clear has thrown everything up in the air for me. And what is more worrying is if the diagnosis is wrong, I am concerned as to what is causing the coccyx pain, and if it is the disc that could make things difficult. Really would like to know others experiences of diagnosis.
Thanks in advance!
Posted Tue 17 Nov 2020 15.48 by Northernelf
Have you read about Axial Spondylitis ? Psoriatic arthritis is under the Spondylitis umbrella, along with ankylosing spondylitis, reactive arthritis, and such. There has been more & more research about women presenting somewhat differently than men. Specifically, look up non radiographic axial spondylitis. Not a doctor but it is something I've been researching - I have similar symptoms and more.
Good luck.
Posted Sat 21 Nov 2020 10.17 by Mac
Hi Katherine.
The MRI,
Well it's good that it didn't show any thing new, as in no more damage, bad for you trying too get things sorted. I'd take the first any day of the week. MRI isn't critical but definitely helps as you know. A physical examination is more important in diagnosing things, from what i've found.
Good luck.
Posted Sun 22 Nov 2020 15.35 by Katherine
Hi,
Thanks for your replies.
I know it's good that the MRI didn't spot anything but I suppose it doesn't change the fact that I feel this pain (which has extended to the right shoulder and neck) and feel more lost than ever about what is causing it. I am seeing my rheumo in January (though properly just over the phone!) and I will have a frank discussion with him then.
Thanks again
Posted Sun 22 Nov 2020 16.23 by Mac
I honestly wouldn't worry about the MRI not showing any thing. I'd doubt it will be a phone consultation, i would say they'll bring you in for a physical examination. If my experiences are anything to go by, if there's a problem they'll find it. When i have my examination they never miss once, and if it's not sore when i go in, it sure is when i'm on my way out.
Good luck.
Posted Thu 21 Jan 2021 18.05 by Sandy
Hi Katherine
I too have had a recent PA diagnosis. This follows years of having had flare-ups of lower back pain and ending in having an MRI scan showing disc protrusion in my lower spine - however at this stage PA was not diagnosed. Also get pain in knees, but put this down to being a cyclist and jogger.
Since Feb 2020 I have developed severe problems with my shoulder and very restricted movement in my arm - I thought this was swimmers shoulder as I swim long distances (well I was previous to shoulder problem- now unable to swim at all :( ). I was surprised when my GP referred me for an MRI and a referral to a Consultant Rheumatologist.
Anyway, the outcome after an MRI scan and a couple of very small lesions on my inner wrist the consultant diagnosed PA. Not what I was expecting.
I have a follow-up appointment next week 4/2/2021. So watch this space.
Posted Sat 23 Jan 2021 09.07 by june
Does anyone know if there is a blood test for psoriac arthritis,or how it is diagnosed ?
Posted Sat 23 Jan 2021 19.55 by Katherine
Good luck Sandy. I had a phone consultation earlier this month but trying to communicate over the phone was difficult, so he's going to organise a face to face appointment. Hopefully we'll be in a better place covid wise then.
June - there is no definitive test for psoriatic arthritis unfortunately, hence why in my post I mentioned I am unsure about my diagnosis because it is always a clinical one. However, doctors can rule out other things through tests (such as the closely associated Rheumatoid arthritis) and use scans (such as MRI scans) to support a diagnosis or potentially upturn it I suppose. At the end of the day there is no golden bullet test and it will rest on the clinical judgment of the doctor, using all the evidence available to them (including a physical examination and medical history), to make a diagnosis. That's why it can be difficult to diagnose. I hope things are OK with you and if you need any support, you can post on here and I am sure others will be able to offer you guidance and advice.
Posted Sun 24 Jan 2021 17.24 by Mausie
Hi there - this really highlights the hit and miss of diagnosis.
I was really lucky to have been sent very early on for a Doppler ultrasound on my wrists which showed inflammation. at the time I didn't have any issues with my wrists and thought I was going to have my neck scanned - it had already been MRId and I thought this was just a different way of looking.
Anyway, feeling like a bit of a fraud I went away and thought nothing of it until I got a letter months later telling me I had to come in urgently to rheumatology as inflammation had been see.
So I went to the appointment, asked about blood test and was told in no uncertain terms that they were now irrelevant as the inflammation had been 'seen' and in any case a large percentage (40% ?) of patients do not have detectable inflammation markers. This sometimes means it could be 'sero negative rheumatoid arthritis or another type of inflammatory arthritis such as PsA which doesn't have the same markers.
I too have horrendous pain in neck and upper back and at the other end in sacroiliac joint and coccyx, but since diagnosis have developed symptoms that are typically rheumatoid. feet, knees, elbow (oh God the elbows) .
the main issue though is that the treatment for all these autoimmune conditions is typically the same initially. My diagnosis was Undifferentiated Inflammatory Arthritis and I was given hydroxychloroquine which did nothing and after a few months methotrexate was also added and after 4 months that's not doing anything either.
The thing about scans is that it is possible that there might not be any inflammation to see on that particular day. Blood tests are cheaper and easier to carry out but I really think that the scans should be more available as it seems to be the best way to get a definitive diagnosis.
The MRI on my neck as the time showed no inflammation but that doesn't mean it wasn't there. My neck and upper back are so bad that I have been referred for another one but not as a priority. all they will be looking for is damage, inflamed or otherwise becasue if there is inflammatory arthritis in my spine then I am already on the medication used to treat it.
My biggest complaint about the whole process is the lack of physio therapy. It really does help but I have to cobble it together from Youtube videos whereas being seen face to face for some guidance on how to do exercises properly would be such a help. My GP said NHS was target driven and didn't give a toss about self help and prevention. Great.
Posted Sat 30 Jan 2021 17.51 by Lindz Devine (edited Sat 30 Jan 2021 17.56 by Lindz Devine)
I was told by a rheumatoid nurse, unlike arthritis, PA is extremely difficult to diagnose via a MRI. This is due to the levels of flare ups. RA (Rheumatoid arthritis) tends to show up on a MRI when there is no flare up, and yet PA you must be having a episode for it to be detected on a MRI.
However, there is a genetic blood test that can be done to see if you do in fact carry the PA gene. Once that is detected they can then, start to treat you as though you have PA.
I also forgot to mention, for years I complained about my back pain. I was always fobbed off. In 2015, I finally got my MRI and it turns out I have a bulging disk in my L5/S1 area in my spine, and while its not compressing any nerves it irritates my S1 nerve, resulting in sciatica episodes. It also showed that I also have the on set of degenerative disease in my facets joints.
All this was found on my MRI scan, yet they were suppose to be checking out for PA???
Posted Tue 2 Feb 2021 21.27 by Katherine
Hi Lindz,
Many thanks for your message - that was really helpful. I will ask my rheumo in regards to the genetic test as I have heard nothing about that. Yes, I have something along the lines of a bulging disc which my pain management s believed was the direct cause of my lower back pain and at least some of my coccyx pain. However my rheumo seemed to think less of it than my pain management specialist so who knows?! I am sorry to hear about your degenerative disease - it all seems to happen! I know others who have it and have a reasonably good quality of life - I hope the same could be said of yourself.
I am sorry to hear of your experiences Mausie. Have you not been able to access to face to face physio? I am currently having hands on physio for my shoulder area. I know it is tight on the NHS, especially during these trying times. I hope they manage to find some sort of treatment that helps you with the pain.
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