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Thread: so frustrated

  1. #21
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    just looked through old pictures and realised how bad and blatant my malar rash is, it's not seborrheic dermatitis at all. the dermatologist didn't use a flourescent stain test on my biopsy and i got a letter from the rheumatologist saying he was completely confident i did not have anything autoimmune going on due to my completely negative bloods and inflammation markers. i got a random nose bleed earlier which is another symptom and my joints are agony, the pain moves every second from joint to joint then stops for days or weeks. i really don't know what to do or what's going on i think i'm trying to pretend i don't have lupus when it's so obvious that i do

  2. #22
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    Me and the sun...most exposures causes some sort of symptom to surface within me, on me to being in a complete flare but, always a but in life it seems. With Lupus it doesn't matter if the good news is first or last with the word but...Buuuutttt even when in the sun it doesn't aggravate Lupus either at times. It is like a bitter sweet sorry, Mikey101.

    As I've learned about Lupus over the past 7 years...I don't take chances with the sun anymore unless I am willingly to forfeit some of my body for a few days, a few weeks..a few months. Too risky. Cover and protect.

    Keep looking for your wellness.
    Hugs..O.
    I have Lupus. So *^#@! what.

  3. #23
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    the thing is i've only had a bad reaction to the sun once and i was out far too long and hadn't been out in it for many months. It caused an outbreak of eczema that was itchy for about 30 minutes and then subsided. since then i've been out about 3 or 4 times and nothing at all has happened. all my bloodwork is completely normal, no inflammation markers, no antibodies but the symptoms persist. I'm getting my root canals extracted by a biological dentist as i've been ill ever since they were done and my health was perfect beforehand.

  4. #24
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    I find that sometimes I can go out in the sun and feel fine afterwards. Othertimes, I feel horrible after going out in the sun, and my discoid lupus flares something awful. Lupus is a very unpredictable disease. My bloodwork is perfect, but I know I have it and have had it for a long, long time. I don't care what the bloodwork says when it comes to me.

  5. #25
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    when you say your bloodworks fine what do you mean? ANA negative? no antibodies or inflammatory markers?

  6. #26
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    I realize this thread is a bit dated but thought I would reply in case you are still seeking info.

    You asked about "normal bloodwork". It took 3 months or so for me to get my diagnosis and I would still be without it if I hadn't seen a second rheumatologist as has been suggested in this thread. My sed rate more than doubled in a few months time and I had a lot of SLE symptoms...joint pain, profound fatigue, raynaud's, mouth ulcers, nasal ulcers, anemia despite iron supplements and an intense rash across my cheeks and eyes.

    The first rheumatologist I saw was dismissive because my ANA was negative. He didn't have any answers for my symptoms but basically told me to go home, I was fine. My primary pushed me to get a second opinion and thank goodness I did. As difficult as it was to hear "this is Lupus. You have Lupus" it is a starting point. I'm now new to plaquenil and am hopeful that it will provide relief over the coming months.

    Since receiving my diagnosis, my symptoms have increased. I now get fevers. If I hadn't persisted and gotten the second opinion, I would be mystified by this latest development.

    Good luck to you and I hope you get some answers.

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