How to get an AS diagnosis?
My 18 year old son has had AS symptoms, on and off, since he was 14. Debilitating pain that has affected his life greatly. Both of my brothers have been diagnosed with AS. So, when my son started having hip pain and joint stiffness I unfortunately took for granted that his diagnosis would come easily. There are days that his pain is so bad he needs help to get up out of a chair, he can’t tie his boots or take them off at the end of a day. He really doesn’t remember what it’s like not to be in pain anymore. His Rheumatologist hasn’t been able to diagnosis him with anything according to his blood work and x-rays. They have contributed all of his pain to low vitamin D levels. My son has been on a vitamin D supplement for 6 months with absolutely no improvement. I am taking him to see a new Rheumatologist in a few weeks and I’m wondering what tests I should be asking for? Would an MRI be a better test than the x-ray that they gave him? I’m at a loss for how to help him or what to ask for exactly when we see the doctor.
I kniw what you are going through. l had pauns for years and my doctors would not tell me what was the problem. l did the blood test and was told l have RA. l got the sulfer meds and l broke out not knowing l am allergic to sulfer. l got a 2nd opinion with the same test. l was told that l do not have RA. l did more testing and It came up positive l have AS. Second opinions are good.
I’m sorry your son is having these issues. You are an amazing Dad. I am new to the world of AS. Im going to see my new Dr. in a few hours to get the results of my blood work. I cannot offer advice on AS, but you have my 100% support for everything else 👍
Thank you so much for the reply Rick and Sizzle. I really appreciate your feedback and insight….that’s my entire reason for joining! Unfortunately, I have had AS in my family since the early to mid 90’s. Both of my brothers have it and have not had an easy go of it. Back then, the doctor’s didn’t really know what it was or how to help them. They were both prescribed painkillers and sent on their way…which only created addiction problems on top of the AS. What they have been through is truly terrible and because of that they really struggle to give me advice on doctors, meds, etc.
We just saw a second Rheumatologist this past week and he definitely agrees that my son has an autoimmune disease. He has thankfully ordered an MRI and more x-rays. He mentioned how important an MRI is in his case and we’re hopeful that this may help in his diagnosis. He really needs some relief from his pain and I wish he could have a more carefree life.
I truly appreciate this forum and all the information that it has to offer
how is everything going with the new rheumatologist? Good for you for seeking the second opinion and advocating for your son! It took me years to finally get a diagnosis so I truly understand the frustration.
Sending you so many well wishes and hoping you are feeling confident with how things are going now!
-Erin (Community Member)Thank you so much for the inquiry about my son. The new rheumatologist has officially diagnosed my son with AS. The x-rays and MRI showed exactly what we were fearful of. He unfortunately already has bone fusion, his left side SI joint is severely affected and it has started on his right side as well, he has some spine curvature possibly due to posture, and his entire lumbar region is affected in various ways including bulging discs. I have a hard time with the fact that the first Rheumatologist dismissed my son completely and sent us away with absolutely no answers. However, I am extremely thankful for his new Rheumatologist where my son, his extreme pain, and our family history were taken very seriously. He wants to start him on a Biologic (Rinvoq) right away but that comes with other concerns. So, my son needs some time to do some research before he decides whether to take it or not. He has a lot to consider and to think about for an 18 year old
After years of both working with the health system and of being in it for autoimmune disease I would say follow your gut and get 2nd and 3rd opinions if you do not feel it’s right. My dr said MRI is needed when symptoms but no signs on xray. I have two AI conditions and my bloods are always completely normal no matter how bad I’m flaring. Also assuming he’s had his HLA-B27 test.
My son’s HLA-B27 test was negative. His new Rheumatologist said this was not uncommon
Hi
,
Yes this is right. You can also be negative and have the disease. I am negative and was diagnosed with AS. Hope your doing well today.
Nicky (Team member)
