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  • New Here New Diagnosis Of Tumid Lupus

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    Old 06-15-2016, 10:36 AM   #1
    KDanner's Avatar
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    KDanner HB User
    New Here New Diagnosis Of Tumid Lupus

    I have been in bad health since 2008. Chronic Pain mostly. I have been told Fibromyalgia Osteo and Chronic Pain have had Migraines from age 15 and a slew of other things I forget about including Reynauds. Last April 2015 my health really took a turn for the worse I had facial sensations and numbness that resulted in a diagnosis of a TIA and haven't functioned well since they also found possible MS. My illnesses flares daily and new symptoms I lost the ability to retain words get lost driving started having costochondritis and balance issues. I have been developing rashes on my torso neck and face for 3 summers now Ok so I am adopted but my older brother no blood relation to me has SLE he made a comment that my lupus was looking horrible. I explained I did not have lupus and just my regular stuff he became upset with my doctors and me and told me I looked exactly like he did when he would get the butterfly rashes so this led me to ask a new Doctor I was seeing who was testing for MS who sent me to a dermatologist after 2 separate biopsies and he wanted me to talk to my regular rheumatologist about it being 1 of 2 things a skin condition or Lupus based on all my symptoms so I did and my reg doctor all but laughed saying I did not have lupus and he had tested me several times even in the hospital (stay with me here) and that these doctors were just giving me stuff to worry about SO I became upset and explained he has only tested me once in 2008 never seen me in the hospital and that I would appreciate if he could get on board with the doctors trying to help me so he did the ANA and said there was no way I could have lupus due to my age I am 44 and to old to get LUPUS (yes that happened) so I leave and I get home to a phone call from the dermatologist telling me they tested the second biopsies twice and both times it came back TUMID LUPUS I made the fax my reg doctor and was to call this past Monday for ANA results they were perfect but yet he refused to review fax saying tumid lupus I have now found me a new rheumatologist who is very concerned and wants to see me immediately....I am so over seeing doctors who only want to prove your not sick while 5 others try to help you have some sorta quality of life He is the last of my old doctors to get canned I pay thousands and my insurance is good I feel like they work for me I pay them and I expect to be taken seriously or else you wont get my money...

    That is my story I am looking for support help and any information where to go from here I filed for disability in Sept 2015 and am fighting an appeal which is stressful I appreciate any help and suggestions My new appt is 7/7/2016 with new Rheumy (sorry I am[/SIZE][/FONT]

    Last edited by KDanner; 06-15-2016 at 10:37 AM.

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    Old 06-21-2016, 06:24 AM   #2
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    Re: New Here New Diagnosis Of Tumid Lupus

    Hello & welcome! I squinched reading your post describing your odyssey. Too old to get lupus?!---oh, what an awful & inaccurate statement for a doctor to make! For the record, I was even older than you when a rheumatologist and dermatopathologist finally confirmed, after 20+ years of problems, that I had a "subset" called SCLE (subacute cutaneous lupus erythematosus). Mine is "systemic" in the sense that circulating autoantibodies were found (anti-Ro), but happily it's remained "subacute" in the sense that I've had no major organ involvement (heart, lungs, kidney, brain, etc.). I've done well on Plaquenil, but must also avoid/block sun religiously.

    From my own experience, I suspect people who have a "subset" can truly struggle for answers. (But many people with "classic SLE" struggle too, unfortunately.) And the more slowly symptoms appear & evolve, the harder any condition is to diagnose. And if your rash isn't discoid or malar (the two most common & recognizable ones), GP's and even many dermatologists can fail to recognize your rash. (I saw 8+ derms.) And maybe some "right" tests were never done, like for your suspected TIA?

    In your shoes, I'd start reading. Have you seen the "sticky posts" (permanent info posts) located above the user threads? Included are criteria for diagnosing and classifying lupus, info on APS (a blood clotting disorder seen in some lupus patients; VERY important to read about APS, in light of your suspected TIA), common tests and symptoms, a whole slew of lupus-specific rashes, and reading resources. You could borrow those books from your local library, and use the Table of Contents & index at the back to zero in on the sections that seem pertinent.

    BTW, those diagnostic criteria have been in use for some time and are rather old. A newer version was proposed back in 2012 or so, called 2012 SLICC SLE Criteria, but I don't think it's been formally adopted yet by the various rheumatological organizations. Why I even mention it: unlike the version in current use, it lists TUMID LUPUS by name.

    re your appointment: I wouldn't be surprised if your new rheum runs all-new blood labs (they often trust their own specialty labs more). Also, thorough tests for APS. Also urinalysis, of course, to double-check kidney function. And if there's any concern about heart, lungs, kidneys, etc, maybe other specialists (but I truly hope none of those will be required).

    Also, he may refer you out for a final round of skin tests---again on the theory that he knows the skin specialists most conversant with lupus. I learned a curious thing during my final round of skin biopsy: that labs actually keep old skin samples for 7 years. My dermatopathologist had me write to my old labs, to have my old samples mailed to him; and he then retested the old two, as well as performing a new punch. He did the classic LBT (Lupus Band Test), a two-step procedure. First step: the usual study under the microscope. Second step: application of various immunofluorescent stains, to see whether the stains fluoresce in the "linear bands" that prove lupus. I was grossly positive on all 5 stain tests, across all three skin punches, proving lupus to a greater than 99% certainty.

    LBT's aren't done often at all because they simply aren't needed for most patients, meaning for most, blood labs, urinalysis, symptoms, etc. are sufficient for diagnosis. Plus, the LBT is a complex procedure that few specialists can perform, and it's expensive. Caveat: I don't know how well the LBT "works" for tumid lupus: it may not be an appropriate test for you, but I thought it worth mentioning, just in case. You could more about the LBT in those library books, btw.

    My main point: if your new rheum calls for all-new tests, don't be alarmed or annoyed. I'd actually view that as thoroughness on his part, not skepticism. And after all these years, you surely need certainty. I'm very glad you found us. Stay in touch, OK? Bye for now, Vee

    P.S. I recall someone posting about Tumid Lupus a few years ago. You might be able to locate those using Advanced Search (in the blue bar).

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    doctors dont care, lupus symptoms, skin biopsy

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