Ankylosing Spondylitis query, neg bloods

[Jennyjenjen01]

Hello! I will try to keep this as short as possible I have suffered chronic pain for over 7 years now. I get stiffness and pain in the lower back/pelvis in the morning and daily lower abdomen pain which gets much worse leading up to ovulation and to my period.

I also have IBD that flares during this time. I rely on pregabalin and Oramorph at the moment to keep me being able to get to work and go out with my husband and children.

I do have Adenomyosis, they queried endometriosis but no definitive diagnosis.

A CT scan recently showed severe degeneration of the pelvis. The GP suggested that he suspects Ankylosing Spondylitis so ran some bloods (inflammation and genetic factors). These have come back negative.

I know it sounds bad but I was hoping to finally be close to receiving a diagnosis.

I am hoping there is there a possibility that diagnosis does not solely rely on bloodwork.

Does anyone have any knowledge or experience of negative bloods but a diagnosis being achieved?

Thank you for reading

[Runrig01]

So with ankylosing spondylitis only 50% of patients have raised inflammatory markers, even in a flare. Here’s a good leaflet re getting a diagnosis where it states the 50%.

nass.co.uk/about-as/what-is....

If you’ve suffered a number of years, it may show up on X-ray of the sacroiliac joints, mine were fused when they started suspecting. There is criteria to getting a referral to rheumatology, which I’ll attach. You need to score 4 or more. 90% of patients are gene positive, but you can be negative and have AS.

bmj.com/content/bmj/suppl/2...

[Jennyjenjen01 in reply to Runrig01]

Thank you so much for this information, I will make sure I have a good read before I approach my gp about the results!!

[pineapple_head]

It took me over 20 years to get a diagnosis. I had the same health problems as you, ie, endometriosis, adenomiosis, IBS, lower back pain but it was later diagnosed with sacoiliatis. My inflammatory markers are mostly negative. You nees to request an appointment with rheumatology and than request for an MRI of your entire back. That's how i was finally officially diagnosed. Also visit the NAAS website.

[Jennyjenjen01 in reply to pineapple_head]

Thank you so much for this information, I will definitely speak to my GP. I can imagine the wait for Rheumatology is a long one so I will keep a diary in hopes it proves I'm not going mad 🥲Glad you finally got a diagnosis, but not for the time it took. It's not good enough, 20 years is a long time of suffering.