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Nov 6, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

Like any autoimmune, it doesn’t have a specific marker to determine positively that this is the actual disease she has, but gradually with constant “normal” test results and narrowing from symptoms, they are concluding stills and so far the medication they are starting has completely turned a new leaf for her.

Nov 6, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

Update: we finally have a diagnosis, labeled Adults Still Disease. She is on day #4 of Anakinra injections with 4 days of afebrile, increase appetite, and most importantly- a smile. We ruled out giant cell arteritis/temporal arteritis by biopsy and also have a negative bone marrow biopsy. Still Disease has only been seen in 1 of 1.8 million people and is extremely rare.

Oct 26, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

Thank you for everyone’s input on finding some information. Upon reading most of the autoimmune diets, it seems it’s very specialized- yet when my mom is only eating 3 green beans and a couple bites of soup a day, it’s hard to get any type of nutrition.
The last few days have been difficult for her. She has continued to spike fever, 102’s mostly. She is continuing to loose weight and become weaker, with now needing some assistance to walk. She visited the School of Chinese Medicine in Houston yesterday where acupuncture was performed. He seems to think she has some type of infection from The Harvey storm flooding.
Today she continued to spike fevers. With not knowing what else to do and desperate for answers, we have a private jet scheduled for tomorrow morning to fly us to Arizona to arrive at the Mayo Clinic ER. Myself and another ER nurse will ride with her and have ambulance pick her up at airport. I am desperately hoping we find some answers.
I will keep all updated on what they explore.

Oct 26, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

Thank you for asking. I am doing well.

Oct 24, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

My mother has been diagnosed with Behcet’s about 6-7 years ago, with medications prescribed to her, some of them Methotrexate, Prednisone, and recently Remicade infusions. Recently, she began having spiked fever every day (102’s and 103’s). Concerned, she was admitted to a local hospital, with extensive testing. Testing included liver biopsy, CT abdomen, body scan, MRI of brain, lumbar puncture, echo cardiogram, EGD, colonoscopy, repetitive antibiotics, daily lab work, including testing for ebstein barr and lyme disease. Reports show that she has an elevated ANA, and they also sent her labs to a different state for a specialized autoimmune testing, in which we haven’t received results. All tests in hospital were negative for any infections, and just show her elevations in regards to her autoimmune disorder. The physicians also evaluated specifically her previous wreck which left a fractured lumbar and broken tooth, along with a cervical surgery she had 20 years ago, just to rule out infection that never healed. The rheumatologist that saw her in hospital brings up the concern that she was misdiagnosed with Behcet’s and feels the Remicade infusion may have caused some unnecessary additional autoimmune disease, on top of the primary one. Which leaves her with an undiagnosis currently. She was finally diagnosed with “Fever of Unknown Origin”, and released from the hospital after 22 days of admission and daily testing, with directions to take doxycycline po, ibuprofen/tylenol interchangeably with increase in fluids and follow up appointments with internal medicine, rheumatologist, and hepatologist. Within the last 3 days of non-hospitalization, she has spiked fevers in the 102’s daily, with tylenol/ibuprofen around the clock. She battles fatigue, fever, weight loss (30 ish lbs), nausea, vomiting, weakness, migraines, total body pain. My father is setting up her with a holistic physician as a last ditch effort for some relief. Yet, as a emergency nurse, I know the symptoms she has warrants an emergency visit, yet she was released with all necessary testing negative, with the exception of elevated labs in regards to her autoimmune disorder. Although “fever of unknown origin” may be a true diagnosis, I feel like there is possibly something that we are missing. Can anyone recommend what steps/testing/physician/clinic we should consider next? Any traveling needed is absolutely an option, as we will travel worldwide to figure this out for her to live a normalized life.