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2nd Opinion For Diagnosis Of AS

A MySpondylitisTeam Member asked a question 💭
Granite Falls, WA

Just curious as to how many of us got a second opinion with their diagnosis? Our daughter (28) went in today to a physiatrist—referred by her primary dr—to talk about getting x rays and possible mri to see if there is any evidence of AS. I was diagnosed radiographically (all bloodwork was negative, except for low/high inflammatory markers). My mri was SO evident! He told her that her mom was probably mis-diagnosed, that her symptoms of lower back pain are from giving birth to 2 children (both… read more

November 21, 2023
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A MySpondylitisTeam Member

I didn't because it took 25+ years to get this diagnosis. My younger sister had to get a PhD in pharmacy, go work for the Mayo Clinic hospital, get a rheumatologist that would take her then she got tests. Once she got a positive result on the HLA-B27, I had to go to my PC and give him the specifics scientific names of the tests that they needed to run. A rheumatologist would not see me until they saw the HLA-B27 positive results because this thing is so damn invisible. With all that said, hw many people have a sibling that becomes a doctor of pharmacy for the May Clinic hospital so that we can find a doctor to listen. Prior to that I think I was labeled as a hypochondriac with seeker tendencies. There are so many hard things about this disease but finding someone to help is near impossible. I mean they send women away left and right because we are whiney and we have our cycles so it is all related back to our minstrel cycle. I will tell you that each month my AS is totally awful right before she visits. I am 46 and i don't even need my uterus, take that biotch and the hormones. I will rock a goatee!

November 22, 2023
A MySpondylitisTeam Member

It took an eye surgeon to tell me that I had the HLA-B27 because of my left eye was so swollen and a dark red where the white is and so very sensitive to light. Everytime that happened and i went to go see my Dr or at an er i was constantly told it was pink eye 🙄. Sorry but pink i doesn't make your eyes look like filled up blood color. Finally a er Dr sent me to an eye surgeon and in my early 20s he told me i tested positive for HLA-B27

November 24, 2023
A MySpondylitisTeam Member

Yes, the eye surgeon here in Holland mi delt with this type of eye problems and he knew right away. But he had to do a blood test so i would have the evidence and to seek out doctors to help

November 24, 2023
A MySpondylitisTeam Member

Interesting…. Even without a blood test?

November 24, 2023
A MySpondylitisTeam Member

As women, they always are sex biased towards a proper diagnosis. If you feel that the dr. Is wrong then definitely seek for a secondary opinion/diagnosis since sometimes the blood work HLA B27 is negative for a diagnosis for having an autoimmune disease. Most of the times MRI's, Xrays and CT scans are a better diagnosis then lab work.

November 21, 2023

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