HLAB27 negative
So I had some blood work done to see if I Cary the HLAB27 gene and it came back negative. Where do I go from here? Can one still have AS and not have the gene? I feel like I am losing the battle with all this pain. I am constantly waking up at night with panic attacks and my heart pounding. I feel like with all the blood work and nothing ever shows up is stressing me out even more on top of all this pain. I feel like no one is believing me when I say I am hurting all the time. Does anyone have any advice? I know there is gonna be something causing all this pain. My day to day is in complete shambles. I am lost!!
Hello
- checking in to see how you are managing. Last post above was about 4 weeks ago, and I hope that you've been able to talk with your doctor about the results and moving forward in 2024 with a treatment plan. Maybe you could share? Curiously, Rebecca (community moderator) Hi 👋. So I saw my new doctor today. He scheduled more X-rays and blood work. He also suggested anti depressants for pain and help me relax. Not sure if that’s a good thing or not? While we work on getting to the root cause of all this pain. He did look at one of my previous X-rays and it did show some signs of AS. In the right SI joint. Can’t remember the technical term he used but said since the X-ray a year ago showed some signs he wants to do an update film to see what it shows now. I am hopeful I finally found a doctor that’ll actually listen to me and help get a diagnosis. He seems like he is doing that at least at this point. Sounds like it was an incredibly positive appointment. It's encouraging that he's scheduling additional X-rays and blood work to gather more information. Discussing the potential use of antidepressants might be part of a comprehensive approach to managing both physical and emotional aspects of your health. I am so glad he is working toward a diagnosis. You're not alone in this journey, and seeking support from friends, family, or even online communities can be valuable. Hope to hear from you in the future. Warmly - Rebecca (community moderator)
Hello
- I deeply regret to hear that you're going through such a tough time. Please understand that we can't provide medical advice as we are not physicians. However, what we can share with you is empathy, our personal experiences with this condition, and insights into navigating challenges when they arise.
I surely can relate to your struggle in getting a diagnosis and dealing with pain from spondyloarthritis. For a long time, I went through the cycle of bloodwork within normal limits, not showing inflammation, and being told I was fine. It can be incredibly frustrating when your symptoms are not clearly reflected in the test results. It was only when I was in a severe prolonged flare that inflammation was evident and levels out of whack.
It's important to remember that your pain is real, and your experiences are valid. Having open communication with your physician about the impact of your pain on your daily life may help in finding a solution or further investigations. Maybe consider seeking a second opinion or consulting with a specialist with expertise in spondyloarthritis. Having a supportive healthcare team that listens to your concerns and works with you to find the best possible solutions for managing your condition is vital.
As for the HLA-B27 gene ... "It is important to understand that many people who are HLA-B27 positive will never develop axSpA or AS. Also, many who are HLA-B27 negative are diagnosed with axSpA or AS." Here is a link to an article that may help.
I wish you the opportunity to explore our website, educate yourself, and connect with someone genuinely supportive as you seek the answers you're looking for.
https://axialspondyloarthritis.net/clinical/genes
Thoughtfully, Rebecca (community moderator)
