Changed diagnosis

Hi all. I saw my rheumy last week after getting blood work done. I definitely have Hughes (APS) and my HLA B27 is positive, suggesting ankylosing spondylitis. My Ana is negative so maybe not lupus even though I have 7 of the 11 diagnostic criteria. To confirm AS I have to go for X-rays. Mom has psoriatic arthritis so AS would be more likely. I'm 53 and I've had a hell of a year. Ear infections, bronchitis, in the hospital for GI problems, surgery on both my big toes and finally a pulmonary embolism. Now I can tell I've gotten a heel spur..... Very painful. I'm not happy about having an illness but at least it has a name now. I'm not just a nut-job anymore!!!

3 Replies

  • Wish you didn't have any of this going on, jenin...but am thinking HURRAH...this, is one of those 💡 Moments: savour every minute of having the hughes diagnosis + this provisional ankylosing spondylitis diagnosis!

    I like your your "suggesting" & "maybe not"...having been through everything you've experienced health-wise, you'll know that this life of immune dysfunction/connective tissue disorder tends to involve overlapping conditions...with these 2 diagnoses, you're well on your way to a much more convincing understanding of the causes underlying your health probs

    No way have you ever been a nut job‼️

    Am so glad you posted...please let us know how things go

    🍀🍀🍀🍀 coco

  • Hi. Also read your post on the Hughes Forum. Glad that you are getting somewhere with diagnoses. And that your symptoms are no longer being written off as psychological, etc. I know how awful that is from my own experience and hope that things will improve for you. Best :)

  • Hi Jen,

    My diagnosis turned out to be AS with features of Behcets syndrome. Just be aware that you can have AS without X Ray's showing radio graphic changes, especially if you are female. Woman have much less " classic " spinal disease than men and more peripheral joint problems. I would ask for an MRI of your spine or other affected joints as its much more sensitive.

    Feel free to ask any questions.

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