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Thread: Diagnosis Help

  1. #1
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    Default Diagnosis Help

    Hi everyone!

    I'm new here. I am having trouble getting a diagnosis from my rheumatologist. This past July, after spending a week in Colorado, I broke out in what my regular doctor called a lupus rash. I had a butterfly rash across my face. I was put on steroids and the rash cleared up but left a blush across my face. Three days after the rash developed I started having flu like symptoms, fatigue and joint pain. My doctor ran an ANA test that came back negative and some other tests that came back normal also. He then referred me to a rheumatologist. The symptoms I was having lasted about a month and then I started feeling better, only I was left with mild joint pain. Right after Thanksgiving I had another flare up with the same symptoms only this time I had a lot of mouth ulcers and more severe joint pain. This flare up only lasted about 2 weeks. Right now I am feeling better but have mild joint pain. All of my tests are coming back normal. The first rheumatologist refused to tell me what he thought was wrong and just gave me a muscle relaxer and celebrex. I am seeing a new rheumatologist on Wednesday. I am hoping to get some answers with her. Does anyone know if you can have lupus without having abnormal blood work?

    Thanks so much!

    Keli Holly

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    Hi keliholly,

    See the forum "Newly Diagnosed" with the subheading "Lupus Criteria." This will help you out. Also, Saysusie often states that it is not always the lab work that determines if you have a diagnosis of Lupus. Many patients have the syptoms, but their lab work comes back negative.

    I would highly recommend Daniel J. Wallace's book "Lupus for Patients and Families." It can be found on Amazon very reasonably, and it will answer a lot of your questions throughout this disease. I always refer back to it at different stages; there's just too much to remember. In the book, Dr. Wallace talks about negative lab work; though the patient may have all the symptoms. Labwork is not always definitive.

    In the meantime, checkout the Coolibar website that has uv protective clothing. They frequently have a Fall sale beginning the 1st week of September until January or February. I purchase a couple of clearance blouses a year so I don't have to slather on the sunscreen year around.

    You need to find a rheumatologist that you are comfortable with and understands lab work is always not the answer. What state are you in? Maybe a couple of other ladies could make recommendations depending on your location? Just a thought. You are not alone.

    Take care,

    Faith

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    Sounds like lupus symptoms to me!
    I have a bunch of symptoms, too, that all point to lupus, but all of my blood work has come back normal. My rheumatologist said I might have seronegative lupus, which is when you have lupus but no evidence in your blood to back up the diagnosis. So, he is treating me as a lupus patient by giving me lupus meds, etc. Some people will never have that positive ANA, for others, the ANA won't show up in their blood until years later.
    But, obviously, your symptoms aren't normal, so don't let a doctor dismiss your symptoms as nothing just because of negative blood work. Keep trying new doctors until you find one that believes you and cares. Been there, done that!!
    Welcome!

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    Thanks so much for your replies! Your info really helped. I ordered the Lupus book, it looked like it would be a big help. I am hoping that I can get some answers tomorrow. I'm just afraid I will leave with no answers again. This has been so frustrating! One doctor told me that my blood work was "way normal". I'm not sure how I can feel the way I do and have "way normal" blood work. Does not make sense to me! Anyway, thanks again for your help!

    Keli Holly

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    I second the vote for Daniel Wallace's book. I read through it cover to cover when I was going through the diagnosis process, and still refer to it - often.

    I had an elevated ANA years ago - and my primary care doc warned me that I might be facing something autoimmune-related down the road. Sure enough! When I got really sick, my ANA was through the roof. But, until recently that's the only blood test that indicated lupus as a possibility.

    You'll read in the book about the criteria they use to diagnose lupus. My rheumatologist was clear with me, though. She said that criteria is really only important for research standards. She treats many people for lupus who never fulfill the official diagnosis criteria. By ruling out other causes, a good doctor will still be able to make a diagnosis and get you started on treatment that should help.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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