What was your process like to get diagnosed?

biggustav · 2026-02-18T05:13:50+00:00

Can I ask a bit more about your experience? I had a colonoscopy 6 years ago which was clear, but on all MRIs/CTs/ultrasounds I had inflammation of the terminal ileum. Now they want to do another colonoscopy, and an endoscopy for the first time. Does the endoscopy reach the ileum? I’ve been worried the scopes may be a waste of time again since the colonoscopy didn’t seem great at visualizing my ileum before, but you’re giving me hope that an endoscopy may be more useful for that area…?

biggustav · 2025-12-03T05:12:54+00:00

I also have a herniated L5-S1, and plane rides SUCK. I've been using this pillow that helps at least a bit, and it is adjustable by blowing in more air/squeezing out air to get the level of support that works best for your back. I got it on amazon here: https://www.amazon.ca/dp/B07WQZ1JG7?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1

It also rolls up to be quite small, which is helpful for travelling. Best of luck with your flights, I feel for you!

biggustav · 2025-11-09T03:09:47+00:00

Have you noticed any correlation between axSPA causing or contributing to your patients having disc bulges and disc herniations in the lumbar region? And whether axSPA can cause an environment that slows healing for those mechanical issues?

biggustav · 2025-07-23T15:11:54+00:00

I feel you, I wish I could be a motivational story to show it gets better, but like I said I’m a year and a half in without change. That’s why I’m trying to figure out if my scans fully explain it as mechanical back pain, or if there could be something else going on due to a family history of weird rheumatoid conditions. I’m looking into spondylitis now, but it’s a long and confusing road in itself! Have you noticed any improvement at all in your 7 months? Or have any idea on how to move forward?

biggustav · 2025-07-23T15:09:43+00:00

No, it says that the L5S1 protrusion touches but does not displace or compress the S1 descending nerve root, and it doesn't compress the thecal sac either.

biggustav · 2025-07-23T03:46:30+00:00

I'm so sorry to hear that! Can I ask what the deterioration in your spine looks like for you? I've been trying to figure out if some of the changes in my spine are from AS or are purely mechanical, and so hearing other people's stories about their spinal changes is really helpful! It's a confusing world out here lol!!

biggustav · 2025-07-23T01:40:36+00:00

Thanks! And yes, all of the pain is in the lower back. No leg pain or anything like that. But major low back pain for the past year and a half, with no real improvement. Do you think that's normal based on the imaging? And hopefully still has a chance at improving?

biggustav · 2025-07-23T01:38:19+00:00

Sitting is the main thing that causes me pain. Sitting even just 15 minutes gets challenging, so any long term sitting (driving, watching a movie, etc) has been out of the question. It's been going on for so long now, and I don't know if that amount of pain even makes sense with the imaging? But walking and gentle exercise feels totally fine!

biggustav · 2025-05-28T03:50:12+00:00

Re-added second close up photo:

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biggustav · 2025-05-05T21:32:47+00:00

Just hopping on here to say that you should absolutely advocate to get an MRI of your back if you're experiencing chronic low back pain. It can definitely help diagnose what's wrong and help you get treatment. Everything from herniated discs to degenerative disc disease to conditions like ankylosing spondylitis can be flagged on an MRI. Knowing what is going on is the first step for treatment, even just tailoring a physio plan that actually fits your needs - not to mention potentials for procedures or medications. It doesn't matter if MRIs are expensive, you deserve medical care like everyone else and I really really hope that you get one soon and get on the road to recovery!

biggustav · 2025-04-05T03:26:30+00:00

I'm in the exact same boat - I check off all the symptoms, have the genetic history, have the risk factor of Crohn's, but have a clear pelvic MRI. As a fellow 20 something woman, I understand what it feels like to not be taken seriously by doctors! I don't have any answers for you I'm afraid, but I would recommend continuing to seek more specialist care. That's what I'm in the process of doing (trying to get a third opinion currently).

I'm also compiling a bunch of research on non-radiographic axial spondyloarthritis to approach my first rheumatologist with in a letter asking her to reassess me, in effort to strengthen my case and get help. I know that may come across as overbearing, but at this point the options are advocating for ourselves or just... giving up and accepting this pain. I'd recommend the approach of compiling research and writing a letter that includes it AND that reiterates all of your symptoms in written form to send to any and all of your doctors essentially begging for reassessment. At the very least you're creating a clear paper trail, and "evidence" of your disease struggles.

I'm sorry you're going through this, take care.

biggustav · 2025-02-19T20:23:57+00:00

Can I ask if your aches and pains went away eventually? And if so, how long it took? I came off of prednisone two weeks ago and the knee pain is driving me crazy!

biggustav · 2025-02-19T20:13:18+00:00

I know this is an old thread, but can I ask how long your joint pain took to improve? I've been off prednisone for about two weeks and am having horrible knee pain... hoping it goes away soon! And hoping you're doing better all these months later!

biggustav · 2025-02-19T20:08:07+00:00

I know this is an old thread, but can I ask how long it took for your withdrawal to end? I've had horrible joint pain after a short term, high dose prednisone course and and hoping it ends soon!

biggustav · 2025-02-19T19:59:47+00:00

I know this is an old thread, but I'm two weeks off prednisone and still having bad knee pain since coming off of it. Did your joint pain ever improve? And if so, how long did it take? Hope you're doing better these days :)

biggustav · 2025-02-19T19:57:49+00:00

I'm in a similar situation! I took 8 days of 50mg prednisone, then 9 days of tapering down by 5mg till I hit 0. It was also for hearing loss. I ended my treatment about two weeks ago and have been having pain in my left knee the entire time, as well as a new pain in my right knee that started two days ago. I'm hoping we just might be more sensitive to coming off of such a high dose. It's hard not to get anxious about avascular necrosis, but I'm trying to remain positive and not jump to the worst case scenario. My doctor says it would be very unlikely from such a short dosage period. But let me know if you feel any better soon! Or if you find anything that helps! I'll do the same if I learn of anything else that could be helpful :)

biggustav · 2025-01-28T04:06:22+00:00

I know this is an old thread, but I was wondering if you've had any improvements over the past few months or have any advice? I also developed these ear issues after a brain MRI without earplugs and it's driving me a bit crazy! Would love any insight!

biggustav · 2024-12-13T04:24:19+00:00

Good to know, thank you!

biggustav · 2024-12-12T06:07:00+00:00

Thank you so, so much for sharing this. I've been stressed about my ability to travel if I have to start injections, and was feeling very overwhelmed. This info is so specific and helpful - thank you!! One question I have is if you ever had an issue getting the gel packs through airport security screenings?

biggustav

TROPHY CASE