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Early symptoms
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First symptoms, symptoms prior to dx, symptoms leading to doctor visit, childhood symptoms
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Told physician
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Things patients told their doctor about their symptoms, before diagnosis, for diagnosis, after diagnosis
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Failed therapy
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Therapies tried and failed prior to diagnosis -- may include pharmacotherapies, physical therapy, chiropractic, acupuncture, different mattress, psych therapies, etc. etc.
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Wrong diagnosis
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Misdiagnoses prior to eventual diagnosis of SpA (example - “they thought it was a back sprain” -- “they even thought I had cancer as a child” “they told me it was because one leg was shorter than the other” etc.
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Diagnosis
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Experience with diagnosis and delay, Getting the SpA diagnosis, hearing the SpA diagnosis for the first time
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Helped diagnosis
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Things they helped get a diagnosis – Firing docs and getting new ones, self-advocacy, having an advocate doc, friends/family who advocated, persistence, HLA-B27, etc.
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HLA-B27
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Discussion of genetic predisposition, family history, results of the HLA-B27 test.
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Impede diagnosis
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Things that interfered with dx – Gender, MD or family disbelief, “drug-seeking”, No HLA-B27
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Health system
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Comments about insurance coverage, co-pays, access to services, pharmaceutical industry, etc.
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Done differently
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Things the patient might have done differently in retrospect - things they wish they would have done to get their diagnosis sooner.
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Advice for physicians
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Advice for primary care docs, rheumatologists, other docs
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