Hi I m new here I m in the process of narrowing down a diagnosis for my...

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  • Nothing. A lot of times xrays look normal which is why AS goes undiagnosed for many years. Doctors think nothing is wrong.

  • So what tests should I ask for that will hopefully help?

  • MRI of the sacrum I suggest you look for a Rhuemetologist who knows about the disease, not just a

    Gp

  • There aren't any yes or no tests for AS. But if you're meeting with a rheum, they know what to look for in your labwork and xray/mri results to make a clinical diagnosis. So you could have xrays, mri, labwork all come back normal...and this doesnt mean you dont have AS. I've had xrays, MRIs, bone density scans, labs (crp, sed rate, hlab27, c3, c4, vitamin b and d,cbc, cmp) and more that I cant remember.

  • Xxxxxxx YzzzzzzDonough he's a rheumatologist for sure. I'll push for a MRI on Tuesday at my follow up appointment.

  • Xxxxxxx Yzzzzzz thanks. I wasn't sure. But it sounds like perhaps getting a MRI would be my next step, regardless of the X-ray outcome...if the rheumatologist isn't finding the pain source?

  • They don't typically do MRIs so dont be worried if he says no to it. If he's a rheum, he should know what to look for and where to go from there.

  • He may send you to a pain management doctor for steroid injections or just start treating you for something like AS, fibro, etc. Again sometimes all they have to go off of is what they see in clinic if tests come back negative. So some start to treat for something in hopes it will help.

  • Xxxxxxx Yzzzzzz ~ I go to Hospital for Special Surgeries and to a Rheumatologist who specializes in AS. I had been to two other Rheumy's who could not diagnose me... he said all the x-rays and tests were close but you really need an MRI of your sacrum... that is where you would see lesions.

  • Xxxxxxx YzzzzzzDonough most of my pain currently is in my sacrum. But the X-ray images are terrible.

  • yes.. that is why you need an MRI of your sacrum. good luck, honey... I know how difficult it is to not have a definitive diagnosis. It took me 8 years... best wishes... keep us updated!

  • I just want to say that sometimes part of diagnosing AS is seeing how you respond to meds as a trial and error and process of elimination kind of approach. This is not an easy thing to diagnose and takes time. Rheumatologists are kind of like detectives in their search to accurately diagnose people. Please do not be discouraged if this takes some time b/c chances are, it will.

  • Have they checked your HLA-B27?

  • That was on the lab test I took last week. I get the results Tuesday.

  • jus hope it not +ve

  • There doesn't seem to be an exact science to testing or what a rheumotologist will do. The only damage that shows up on me is in my neck, and without my lab for high C-reactive proteins and HLA-B27, I may not have been diagnosed.

  • Kathleen 8 long painful years for me as well

  • the highest my CRP ever got was 122 (normal is for this number to zero. Oh the joys!

  • When I was being diagnosed they did 3 major things that I was told were sort of "standard testing" for AS. they checked my C-reactive protein levels (when I was tested, I was not even in a flare up and it was 156, which is pretty high), checked to see if I tested positive for the HLA-B27 gene (I tested NEGATIVE btw, so if you don't test positive, it doesn't mean you don't have AS, and it certainly doesn't mean you don't suffer any less than someone who tests positive), the last thing they did was confirm with an MRI. my rheumatologist said it's common to have ridges along the bones in your pelvis/hips. What made her so sure that I have the disease is the fact that the day I went to get my final diagnosis, I had uveitis which is also a common, painful condition that you can get in your eyes. I also have a patch of psoriasis that will inflame and become so raw and sore with blisters and bleed when I'm in a flare. It's so frustrating when AS goes undiagnosed because there are SO MANY CHARACTERISTICS to this disease that should be considered right off the bat. I've been suffering since before puberty with excruciating back pain and hip pain so much so that I was offered Percocets when I was only FOURTEEN YEARS OLD. Don't give up. Advocate for your own health. It's very important.

  • Xxxxxxx Yzzzzzz I had my first surgery on my spine in 08 so I'm at that same time line as you and Kathleen. It has been a roller coaster since.

    Why I don't know. But it's incredible that people with this type of pain have to suffer. It's terrible.

  • I'm hoping that given the lab results, this rheumatologist will help me. I had a slew of labs done. Those two were on there.

  • Melanie living in a very small village in the UK my doctor (who died of alcohol poisoning!!!!). Would not listen or refer me. He said it was because I was female, because I had had two babies and because I had had long surgery for repair a hole in my heart

  • I've had spasms since I was in 7th grade which was almost 25 years ago. I just suffered through it.

    I have a question about the uveitis. Is it always painful? Often I get blood shot patches in the whites of my eyes. It'll last anywhere from 7days to 6 weeks. It doesn't hurt. But people see it an are very freaked out because it looks so strange. But it's not painful.

    I've also had issues with high ocular pressure. Could this be linked?

  • Annie no it's not. It's about quality of life. It's about not sitting on the sidelines and watching life pass us by because participating is too painful. That's not a life. That's suffering. And I hate that this is the norm for myself and others.

  • Xxxxxxx YzzzzzzDonough Good advice. It also took 8 years for my correct diagnosis. MRI of sacrum is a must.

  • What the doctor showed me looked like little starbursts on various spots on the bones. I wasn't Dxd until early forties but have been symptomatic since 17. A doctor in my teen years dismissed my symptoms as "growing pains". Boy, there are a lot of bad doctors out there. I wish I'd gone into medicine instead of law. Maybe I could have helped more people.

  • That's terrible.

  • I had a second read on my X-ray which showed some inflammation. We did an MRI and it showed bilateral sacroilitis, inflammation of the facet joints and erosion of the right si joint. Given my history and increased inflammation in my blood, the doctor said it could really only be AS at my age (31 at the time)