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Struggling To Get Diagnosed. Blood Tests/scans Inconclusive

A MySpondylitisTeam Member asked a question 💭
Norwich, UK

Although my mri's have shown early indication (but inconclusive), my blood tests keep coming back without raised inflammation markers so my Gp has refused to refer me to rheumatology. All my symptoms/pain point to axial spondylitis but I'm really confused.
Has anyone else experience this with blood tests for inflammation? Thanks

May 17, 2023
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A MySpondylitisTeam Member

I have crohn's disease since 2014 and so when they did tests back in 2017 for my back they told me that I had very mild disc disintegration that it was starting of arthritis but they never told me what type though. My CRP wasn't really high at the time because I was on treatment for crohn's. I'm CRP still not elevated or any now but x-rays say different now

May 17, 2023
A MySpondylitisTeam Member

Get mri done that should rule out everything that's how I was diagnosed mri picked up everything x-rays blood tests missed

January 29
A MySpondylitisTeam Member

I get the feeling that although these autoimmune diseases have been known to rheumatologists for a while now, the doctors still don't have a great handle on what happens in our bodies. I get the same thing - my doc has changed my diagnosis several times and always seem to be a bit puzzled each time I see her. Symptoms come and go, inflammation comes and goes and blood markers change from draw to draw. All of these changes over time make it hard for physicians to nail down an exact diagnosis. Add to that the overlapping nature, multiple systems involved, and ongoing research and it is kind of a cluster-%$&^. I think docs prescribe medications based on their best "guess" and if the meds don't help, they test again and try different medications.

I feel for you all. It is a frustrating and painful journey!

January 29
A MySpondylitisTeam Member

You might want to get a second opinion. That sounds really unacceptable! I hope you can find a doctor with more experience in this area.

January 29
A MySpondylitisTeam Member

I saw the Dr today and the Dr was confused about the blood test they did and the results of the x-rays. They had to go over them with the radiologist and then came back to tell me that is not AS and that I have to just deal with the pain and limitations that I have. That going redo x-rays in 1 year to see if any changes. They told me that steroids aren't going to b good for me and to not ever b on them again. I wasn't given anything for pain or anything. My pain is about a million on the pain scale.

May 17, 2023

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