Changed diagnosis : Hi all. I saw my rheumy last... - LUPUS UK

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Changed diagnosis

JenInCali profile image
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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!!!

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JenInCali
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Barnclown profile image
Barnclown

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

MrsMouseSJ profile image
MrsMouseSJ

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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