2 Responses

  1. Thank you for your presentation Ken, great job! (Thank you for posting Steve) Yes, you are absolutely correct, SLE is a VERY difficult disease to diagnose (esp in men). I would suggest anyone who has been diagnosed w/ fibromyalgia to please see a rheumatologist and ask him/her to run an ANA test and accompanying ENA PANEL https://labtestsonline.org/understanding/analytes/ena-panel/tab/test/
    *I am NOT saying FM is not real it most certainly is and one can have both, however it is imperative that prior to accepting FM diagnosis that one rules out any AI disease including CTDs such as SLE. Some docs do not think to test or put it off. This can be very detrimental to long-term overall health. Early detection can prevent organ damage that may be irreversible.

    GI, pulmonary, endocrine, lymphatic system, CNS & autonomic nerv. system, etc can all be involved in SLE. Pain is something that in SLE, like w/ other diseases in Ken’s series, is not fully appreciated. I like the explanation of it being your body (immune system) destroying itself at the cellular level.
    I wanted to add a couple links that may be helpful to those either newly diagnosed or who think they may have lupus or another connective tissue disease (RA, myositis,scleroderma,sjogrens, or ‘overlap’ of 2+ of these-MCTD)

    http://www.lupus.org/ (Lupus Foundation of America)

    http://www.hopkinslupus.org/ (Johns Hopkins Lupus Center)

    *The Lupus Book-A Guide to Patients and Their Families

    Invaluable to anyone who has lupus or is a caregiver to someone w/ the disease. for samples from the book see: https://books.google.com/books?id=dpjVmS4jIjAC&pg=PA128&source=gbs_selected_pages&cad=3#v=onepage&q&f=false
    Dr Wallace is one of the world’s leading experts on SLE . He practices Rheumatology @ Cedars-Sinai Med Cntr UCLA and his book is approved by LFA. Very in depth. Although it has technical ‘medical speak’, it is explained very well in plain English. I can’t recommend it enough.


  2. I just recently learned about lupus the pain n the wear n tear it causes on body. I ws ignorant about it. I can’t believe Dr s deny lupus patients narcotic pain meds. The proof of Lupus is in a blood test and symptoms n such. The flares and heat in joints such as knees’. Come on docs pts cannot fake lupus

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