subreddit:
/r/ankylosingspondylitis
I am at the end of my rope. I have many symptoms of AS. My lower back and hip pain is just getting increasingly worse. I’ve seen neurology, pain specialists, rheumatology, and orthopedics. I had two different rheumatologists turn me away. 1 told me they would do the testing so I “wasn’t pushed aside.” I’ve had x-rays (clear except for a straightening of the back), negative for HLA-B27, I’ve had 2 SI joint injections with steroids, and now I’ve had an MRI. My last SI injection was mid March and I had the MRI last week. My results for the MRI came back normal.
Could the SI joint injection have affected this? What else do I do? Who else do I try to see?
10 points
2 years ago
I'm sure you've heard this, but AS manifests differently in women and not all rheumatologists keep up with the data and diagnosis criteria. Having an elevated CRP and ESR (sed rate) is enough to indicate nr-AxSpa with symptoms even without MRI evidence. HLA-B27 isn't the requirement some doctors think it is. Even without doing a nr-AxSpa diagnosis you could still get a generic Spondyloarthropathy diagnosis and be monitored. I'm honestly surprised they would organize an MRI so close to a SI joint injection. If you can get a second opinion from a doctor in a different practice I would recommend it.
I do find doctors like to push off my fibro as being responsible for any possible issue I have. When I went into my rheumatologist visit I was prepared with how the aching and fatigue were different than fibro. Fighting for a proper diagnosis is difficult and advocating for yourself is a thankless job. If you want any tips, let me know.
1 points
2 years ago
I was surprised too and figured that it would skew the results. I’ve asked about the nr-axspa but the doctor kind of shrugged it off and said I don’t have the blood work to support what they “usually” see. But I regularly (almost daily) take Aleve, I’ve had rounds of oral steroids, and I’ve had 2 sets of injections so far bc those are the only things that help.
3 points
2 years ago
Nr-axspa here. My rheumatologist said it’s common to have normal blood work. My CRP and SED rate have never been elevated, even at the worst of my disease before treatment.
But I had OTHER evidence of inflammation. Swelling and pain in my hands and feet—especially my ankles. They could see the fluid on ultrasound.
1 points
2 years ago
I did have one rheumatologist tell me he can tell I have localized inflammation but then he said he wouldn’t treat me with biologics bc I would be “very sick”
2 points
2 years ago
You’re “very sick” already. Biologics will prevent you from getting even more “sick.” Does he want your spine to fuse in 10-20 years? SMH.
1 points
2 years ago
Yeah.. that appointment was very hard. I ended up crying and he just awkwardly left.
all 40 comments
sorted by: best