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Diagnosing AS

Jul 22, 2016 6:18 PM

Im 22 and I have been in chronic pain for 3 and a half years now and seen multiple doctors. Most of them think I have AS but I am negative for the gene and thus they won't treat me. Is there anyone here diagnosed with AS without the gene? And for all AS sufferers, how was your diagnosis process?

Jul 23, 2016 11:28 PM

Yes, I am HLA-B27 negative but my pain Doctor said people can have AS with negative markers, and can also seroconvert later. I had seen a rheumatologist years ago who I am waiting to see again, since my pain doc said this. Looking up the symptoms, I have them and I think prior negative blood tests were a false negative. I am 37. Do you have anyone in your family with AS? Do you swim? Swimming helps me a lot, as well as Celebrex, rolling my back to maintain flexibility, supportive pillow and bed, good posture, dry eye drops, KT tape, supportive shoes, never lifting anything more than 10 pounds. What are your symptoms?

Jul 23, 2016 11:30 PM

Also, I would get a second opinion if I were you. There is a diagnosis called "seronegative spondyloarthropathy" if they don't believe in seronegative AS. I already have a second opinion lined up... Advocate and prepare yourself. Hope this is helpful.

Jul 24, 2016 11:24 PM

WWhy is AS?

Jul 24, 2016 11:25 PM

What is AS?

Jul 25, 2016 3:04 PM

I have fatigue, back pain that originally started in my lower back and progressed up my spine. It's worse in the morning and my backs getting stiff. My ribcage also started changing shape. I've had 3 doctors tell me they think it's AS but won't treat with a negative gene. No no family history. Thanks for all the advice, I will definitely try it out. What has been your experience so far?

Jul 26, 2016 12:20 AM

Treatment sounds warranted! It's disappointing that those doctors have not been treating using clinical symptoms but want to go by lab results. There are so many people that fall in between. The Celebrex helps me a lot, and I don't have high SI pain unless I lift something. I get various enthesites (tendinitis at the attachment point) and have had multiple injuries without traumas. I heal very slowly. I have a wrist enthesitis that recently healed after 5 years. For many (15-20?) years, orthopedists haven't been able to find anything wrong other than "sprains" and "tendinitis". It's very frustrating. You could do a trial of over-the-counter anti-inflammatory (I used to take ibuprofen, then naprosyn but they hurt my stomach) to see if it's helpful, and then it's more compelling for a primary care doctor or rheumatologist to "continue" a treatment plan rather than "start" one. You are so young! They need to take you seriously!

Jul 26, 2016 1:39 AM

Thanks for all the support, I'm starting to feel crazy with the way doctors brush me off

Jul 26, 2016 8:03 PM

Welcome to our community family Emz95! I've learned a lot from your combo with Invisiblepain. I don't have this and am still learning about my autoimmune issues. The only advice i can give is, if your doctor is dismissive, seek a second or third opinion, until you find a doctor who listens and care. Hugs love & prayers you get answers soon! 🙂💕🙏🌸

Jul 26, 2016 11:02 PM

@ Emz95, you are not crazy one bit! But I know the feeling. It's not ok.
@ Flappys, Your unwavering support is inspirational.
Take care!!!

Aug 29, 2016 1:17 AM

I'm pretty new here. Nice to meet yall. I think I may have AS too but don't know how and where to start to get a diagnosis. So far I'm just diagnosed with Fibromyalgia and endometriosis but I think it's more than that. Here are my symptoms. Tell me what yall think.

Aug 29, 2016 4:50 PM

Cassi33, start with an orthopedist, because they specialize in bones & joints & spine. Hugs love & prayers you get answers soon! 🙂💕🙏🌸

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