How long did it take for you to be diagnosed?
Let me know below how long it took between your symptoms starting and getting your diagnosis?
I feel very lucky that I was diagnosed within a year of my symptoms starting.
Omg he’s put it down to wear and tear !
Did he think I’d never find the entry in my medical notes that states
2019 sacrolitis! N E C!!!
And not tell me!Thanks for explaining! How are they treating you? All the best, Kathy (Team member) they arnt!
If I said 22 years and almost there would you believe me? Would you believe me if I said the ignorance has made my
Whole world smaller ? Would you believe me if I told you even holding my grandchildren’s hands hurt? Would you believe me if I told you I’d had the rolling eyes and fibromyalgia diagnoses multiple times? Hi all mine is a very very very very long story , ironically I came off this site not 3 weeks ago UNTIL. I got a second opinion on a mri full spine scan . I’m just about to start the process to get the care I should have had right from the start ! It’s looking like I’m
Sero negative . As you can imagine I suspected this from start but no body looked in the correct place not once but at least 3 times ! I even have a letter stating I do not have it . I’m
Glad I kept it it’s almost 19 years old now. Nice to meet you all by the way x22 years! Wow. I believe it, though. With dismissive and unknowledgeable doctors, AXSpa can take a very long time to diagnose. I am glad you finally got a diagnosis and can start receiving appropriate care. Welcome to the community! All the best, Kathy (Team member)
10 years and 6 doctors. Have you ever heard of gaslighting?
It has been frustrating to say the least! Especially now-I had found a wonderful rheumatologist who sadly died 3years ago. It took the practice 2.5 years to find new doctors to take his place. I switched biologics once while under the care of a nurse practitioner. After a few months it became clear that the new biologic was not working either. Now I know that it was better than nothing which is where I am now. In July I finally was able to see one of the new rheumatologists and he told me that because I don’t have the HLA-B27 marker that I don’t have AS and he wouldn’t prescribe a new biologic. I had been off the last one since before that July appointment. I have an appointment for October 14. I am starting to have at least one day a week where I am in severe pain (level 😎 and can do nothing but go to bed or lay in my recliner. This doesn’t work when you have a three year old to take care of.
I am going to email the doctor and the NP before my appointment and describe the pain. I will wait until I see them to ask what they think about non-serogenic axial spondylo-arthritis. (I am in pain right now, so forgive me if I don’t get the name exactly correct.)
Thanks for all your support. It has helped me see what my next steps will be.Ugh, I can understand why your journey has been such a roller coaster and so frustrating. Having to wait that long to find another rheumatologist after losing someone you trusted, only to still be without a treatment that’s helping, is a lot to deal with. And trying to manage that kind of pain while chasing after a three-year-old makes it even harder! I’m so glad you’re planning to reach out to the doctor and NP before your October 14 appointment. Hopefully that gives them a better idea of just how much things have changed and how often you’re having those really bad pain days. And I think you were referring to non-radiographic axial spondyloarthritis. Here's an article that talks more about it if you're interested in taking a look: https://axialspondyloarthritis.net/non-radiographic. I really hope your October 14 appointment gives you some direction. Please keep us updated on how everything goes. All the best, Latoya (Team Member)
I just turned 59 yrs old in January of 2021. I got my first Covid shot end of February of that year. By the end of March 2021, I was feeling dizzy like and kind of sore in my upper and lower back. Went to my PCP on and off that entire year. Finally, I asked my PCP to do inflammatory markers lab work in like end of October beginning of November same year. By this time my SI joints and spine were sore/hurting. I had elevated CRP and ANA. Anyway, saw rheumy early December '21, and by end of December I was HLA-B27+,and I was diagnosed with AS. I just made it to 59 with no issues whatsoever my entire life. I am still a very active person today. Just have to pace myself more. AS is one crazy condition if anything. I feel bad for those that have this and are young. I and my doctor have no clue why this HLA gene activated at my age. Keep walking, talking, and do what exercises your doctor gives you.
You have a great attitude! Thank you for sharing. All the best, Kathy (Team member)
