Help/Advice

Digg3r

HI, I'm a 42 year old and could really use some advice. I have a significant family history of Ankylosing Spondylitis. I'm HLA-B27+ and started with symptoms 10 years ago. Back then I had an mri and blood tests which showed no inflammation and some negligible mild changes to the lumber and cervical spine. In 2017 I had another mri which again showed no inflammation and some further changes in the spine, mainly osteophytes. I then developed ulcerative colitis out of nowhere. Fast forward a couple of years, mri again shows no inflammation but lumber spine has now got bilateral osteophytes abutting nerves going as low as S1 some obvious issues with disc degeneration and mild facet joint arthropathy. My Cervical spine had developed mild degeneration including osteophytes and facet joint arthropathy too. Fast forward again to November 2023 my latest mri, still no inflammation but obvious further degeneration of lumber spine and moderate to severe multi level stenosis in my cervical spine from c3 to c7 including spinal cord moulding but no signal changes and significant nerve stenosis from c3 to c7 which I was very aware of through suffering ridiculopathy in my arm.

My rheumatology doctor discharged me due to lack of inflammation, they claim my issues are general wear and tear. I'm in my early 40's not 70's and consider these changes in such a short time to be a little more than general wear and tear.

I'm concerned that in 10 years I have gone from being in pain with minor issues to being in significant chronic pain with severe multi level issues, I was made redundant due to being unable to perform as required in my work place due to pain. Surely it's not normal? I'm concerned as my father who has an entirely bamboo spine said his AS journey was similar. Why are my rheumatologist so obsessed with the lack of inflammation. I cannot take nsaids due to colitis so have only pregabalin for pain which isn't helping. I don't know where to turn to get answers. I have all the typical symptoms of AS, morning stiffness, lower back pain, sciatica, heel pain as well as the spinal changes. How can I get them to listen to me and treat my issues as they present themselves instead of obsessing over a lack of inflammation.

MaryL44

Hello @Digg3r  and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I am so sorry to hear what you are going through. Please look at our website where there is a lot of information. You may find the following useful:

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

I do not have any experience of your condition but, personally, I have been struggling to get a problem dealt with and, after making a nuisance of myself, I found a sympathetic GP at my practice who arranged a second opinion for me. Not only have I now started on a route to proper diagnosis and treatment but I feel better because I am being listened to.

Primarily, I would suggest you contact our Help team (details below) although they are not medical professionals, they are very experienced and may be able to give you some further advice.

Mary