“Well you have a clean x-ray so it must be in your head,” said every stupid doctor everywhere.
X-rays can take up to ten years to show changes if they ever show changes. Not everyone with Spondylitis will fuse in a way that is visible on an x-ray an MRI is what we need! It needs to be the first or at least second step in the process of diagnosis. My doctor did a bone scan after the x-rays showed nothing. I couldn’t walk after all so he knew there had to be more. My si joints and spine lit up like a Christmas Tree. I was then sent for an MRI which showed all the damage AS had already done. Most patients fighting for answers are sent away with only having an x-ray and this is unacceptable. Family practitioners need to know the necessity of the MRI in cases of suspected Spondylitis.
My rheumatologist told me they don’t have a clue how to look at the imagery which is terrifying to me. They need to know what they are looking for and to do that they need to know what they are looking at. Not one of my radiologists know what Ankylosing Spondylitis is so how are they suppose to look for it on the scans? They are getting paid and I am being put through these expensive test and for what? To be told it’s all in my head because they don’t see anything and they don’t see anything because they don’t know what to look for.
Physicians don’t talk to each other so radiologists and rheumatologists don’t know what the other is looking for. Can you guess who suffers from that? Yup, those trying to get proper diagnosis. With the disease most aggressive in the first ten years and a delay in diagnosis 6-8 years we end up spending most of the worst years fighting to prove that we really have a condition that needs treatment. We HAVE to change this. To me I think it’s one of the first things that needs to change, right behind every physician and nurse knowing how to pronounce it and the basics of what it does to the body. So scary when you are taken to the emergency department and have to explain your own medical condition.
The Spondylitis Association of America was working for us to change this. Here is an article of their efforts.