u/PrepareToBeLetDown

So I introduced myself here recently:

https://www.reddit.com/r/ankylosingspondylitis/comments/1tugsj3/anyone_else_diagnosed_from_an_incidental_finding/

But I read how some of you discussed whether I had the condition. I agree self diagnosis isn't the greatest idea. But I also found it interesting how some of felt I was highly symptomatic.

I'm not asking if you think I have it. Dr. Orbai at Hopkins will tell me on 7/13! Hopkins pain management refered me to rhematology when I tested positive for HLA-B27.

Just curious if anyone else may have had similar experience to me?

Obviously I was diagnosed with colon cancer at 23 in 2017. Folfox chemotherapy in 2018. Super nasty neurotoxic chemo combo. You know the stereotype of cancer survivors having neuropathy? That's why.

I was just curious if anyone else here had likely/confirmed AK then had chemotherapy for cancer and symtopms reversed for nearly 8 years before starting up again?

CT scans in 2021 first mentioned Bilateral SI sclerosis and suggested I get HLA-B27 if it would help clinical management. It wasn't followed up on. I had stage 4 colon cancer, and no back pain. But it mentioned it was present previously but no radiologist mentioned it. So I just wonder if my chemotherapy slowed/stopped progression.

My current oncologist suggested I get SI x-rays before my appointment. Still shows mild bilateral SI sclerosis. Same as reported in 2021. I also now have facet arthropathy with some super small cysts and disc bulge at L4-L5. L3 maybe. With symtpoms that have made neurologists suggest fibromyalgia. Which doesn't fit in my eyes. My chemo history had me in touch with multiple neurologists. So they handled my treatment thus far. And inflammatory markers are fine. Ferritin borderline high. I noticed the old scan from 2021 and asked for HLA-B27 last year. I have a totally different team from when I had cancer. So my a complicated patient across Christiana Care, Hopkins, and formerly Kaiser Permanente. So it's really on myself to make sure doctors know my history.

Chrsitiana Care has a very good neurology department. So I started seeing Hopkins more because I just need more opinions.

I always assumed the back pain and sciatica I had was due to colon tumor having spread to the perinerual space and since the symtpoms resolved within a year. Within that year I had a successful colectomy and 12 doses of foflox. I thought it just took time to recovery from the colectomy. But I remember in recovery yelling that, even though I was on hydromorphone, my back was killing me. I eventual got IV toradol for several days and that allowed me to starting walking a mile on the hospital each day. They'll release you early if you're walking a lot. I also did folfiri + cetuximab and folfox again in 2021-2022.

Signatera came back negative today. My next scan is next month. On 9/15/2026 I'll be considered "cured". I'll still do testing after that date but hopefully my anxiety levels continue to drop!

I was diagnosed 12/5/2017 at age 23. I'm 32 now.

Edit: You can read about me here: https://linktr.ee/urgeforpermanence

I wrote this last year.

It was colon cancer! I don't have control over the headlines about me! Hate how clickbaity they are.

Happy pride! I didn't know about this subreddit when it was published.

I'm 32. Stage 4 colon cancer at 23.

Anyone have AK found because of SI degen seen on a colon cancer scan? The radiologist specifically reccomended HLA-B27 testing. Guess what? I'm positive. My spine neurosurgeon, non operative just like having a surgeon review imaging when possible, said to see rhematology so I see Dr. Orbai at Hopkins next month.

My L4-L5 have some mild to moderate issues and I've responded well to rf ablations, PRP, and epidural. If I'm doing trigger point injections with pain management he'll hit my back for me. Usually just upper body if neurology is doing then.

Tirzepatide helps pain and my many neurologists say it helped before weight loss because it must have lowered inflammation. My pain doctor says it only helped pain with weight loss. So I don't think he's fully up to date.

Just started metformin too. I saw the Utah and Australian trials using metformin for fibromyalgia and low back pain. So my primary said sure go for it. Though I like have mostly resolved oxaliplatin induced peripheral neruopathy with a secondary ciprofloxacin small fiber neruopathy/myofascial pain syndrome. Chemo neuropathy was gone and then developed new neruopathy after ciprofloxacin. So frustrating.

I also take cgrp meds for mgrisnes and get Botox for migraine.

Duloextine helps PTSD and maybe pain a little. I also do EMDR therapy for PTSD and pain.

Love doing dry needling with PT too.

Cancer fucks you up lol. But I'm super far into my remission.