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    Old 11-19-2016, 09:30 PM   #1
    oregon1416
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    Suspicions & Appointments

    Let me preface this by saying - yes, I am aware of the dangers of psuedo self-diagnosis. However, with relations to those in the medical field and those who have dealt with lupus, I'm showing many of the symptoms typically attributed to the disease.

    Over the last several months, I've been plagued by a myriad of symptoms including, but not limited to: fatigue (I.e., napping for 3 hours after work, then sleeping another 8 or so), joint pain (particularly in the hips, knees, sternum, and back), difficulty falling asleep because of joint pain, migraines (skull-crushing pain - lucky if I make it more than a week without one), oval asymptotic rash in 6 different places, overall "crappy" feeling, deep flank pain, gastrointestinal issues, and a mental fog that doesn't quite clear with rest or food.

    According to some of the articles I've come across, those with lupus are at a higher risk for shingles - I've had them 3 times in my life.

    I have no diagnosed family history of lupus and don't have a real understanding of the disease. Without a blood test, I know a true diagnosis (of just about anything) is unlikely and nearly impossible. Good news, I do have an appointment to see my doctor.

    I guess I'm looking for guidance when talking to my doctor about my concerns... Any thoughts or recommendations are greatly appreciated.

     
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    Old 11-29-2016, 10:02 AM   #2
    VeeJ
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    Re: Suspicions & Appointments

    Hi, Oregon. When do you see your doctor? In your shoes, I'd hope that he'd run the usual CBC and metabolic panels, thyroid labs, labs for basic key vitamins, urinalysis, and at least the basic ANA test* and maybe tests for antiphospholipid**.

    *ANA is positive in multiple autoimmunes, and in systemic lupus, it's positive roughly 95% to 98% of the time. However, ANA alone doesn't diagnose anything & can, in fact, be mildly elevated due to only a passing virus or bacterial infection, or due to a family tendency. In the "sticky post" section [permanent info posts located right above the user threads], you'll find 11 criteria. Usually---but not always---you must meet 4 or more to sustain a dx of SLE. Envision checking them off in indelible ink: once met, each is permanent. Whether he'd run tests for the more specific "ANA subtypes", I don't know---but certainly if ANA comes back meaningfully positive, someone should, preferably a rheum.

    **Antiphospholipid syndrome is seen mostly in people who also have lupus. It's a blood clotting disorder in which blood becomes sticky, and can cause clots, migraines, fetal loss, etc. There's a "sticky" on it, too.

    Re oval rash in 6 places. Are these areas all photo-exposed? That would be interesting, imo, because lupus is famous for photosensitive rashes, most of which tend not to itch, or to itch only somewhat. There's a "sticky post" on lupus rashes that you could read, to see if any jump out.

    An aside on lupus rashes. My local doctors didn't recognize the lupus-specific rash I got for many years. Why? Because they seemed to know ONLY two, discoid and malar. Mine was SCLE annular, which went right over their collective heads, multiple GP's, one rheum, and at least 8 dermatologists. This is my way of saying lupus rashes are tricky: many doctors, including derms, may not recognize the less-common ones.

    I'd also hope that the doctor wouldn't limit his radar to lupus, but would include all the "close cousins", like RA, Sjogren's, MCTD, etc. Also would check thyroid values, as hypothyroidism can cause many of the same symptoms as milder lupus causes. So... hope this helps some. Looking forward to your updates & sending hugs!

    Last edited by VeeJ; 11-29-2016 at 10:04 AM. Reason: typos

     
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