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Thread: New here and will be seeing rheum for first time

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    Default New here and will be seeing rheum for first time

    Hello!
    I am a 26 year old woman who has been experiencing odd episodes (or you call them flare-ups, I guess) here and there since 2004, my last year in college. Never had a clue what could be causing it and since they'd go away within a couple days and not return for months usually, I just thought it was some freak thing.
    Long story, but I am finally going to see someone about this in April after experiencing what seemed to be drug-induced Lupus from a medication.
    A couple questions:
    1. What can I expect at this first appointment with a rheumatologist?
    2. My flare-ups have occurred very infrequently and I'm sure I won't be experiencing one on April 7, the day of my appointment. Will blood work still be effective? Do my explanations of my experiences in the last few years suffice to a doctor without currently exhibiting symptoms?
    3. On that line, is it possible to have "mild" Lupus? I am typically 100% symptom-free unless I happen to be experiencing a flare, and those have only lasted a day or two for me. Many of you seem to experience much worse symptoms.
    Thanks so much for your help! I don't know anyone who knows a thing about this so it helps to ask others on this website. I appreciate any insight.

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    Hi sare81

    First of welcome to the site. I'm in the same boat as you are...just trying to get sorted out.

    I've been seeing a rhuemy for almost a year now. So I can help ya with your first questiong.

    Take some time and write down three lists. The first list is all the sypmptoms you've had and try to give a time reference...when and how long.

    Second list, all the questions you have.

    It's best to write things down and have then out when you go into the doctor's office. Nothing worse than getting half way home and realizing you forgot something important.

    Also prepare a list of and/or take all medications you are taking...and I do mean all. Even if it's a cream for a rash.

    It can take awhile to get a clear diagnosis...so be patient...the answers may take awhile to get.

    As for the sevarity of lupus...other's can probably answer that for you. I know that you can go into remission for long periods and short periods of time. Flares can vary in intensity from flare to flare. It depends on alot of different factors.

    The biggst piece of advice I can give you is be patient with your self, and brace yourself for alot of hurry up and waite appointments. There are no quick answers.

    Glad you found your way here...it's a friendly supportive site...I'm sure the others will be along soon to welcome you
    Oh look ... a cookie

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    Hi Sare81;
    Let me, also, welcome you to our family. Sits-in-the-corner has given you some excellent advice. I just want to address a couple of your questions.

    1. What can I expect at this first appointment with a rheumatologist?

    As SITC suggested, what you can expect will depend greatly upon what information you are able to give your doctor. Making the three lists is excellent advice. It would also be helpful if you familiarize yourself with the symptoms of Lupus, the different types of Lupus, the treatments, the medications, the overlap diseases and the lifestyle changes that you will need to make.
    In "Newly Diagnosed", there is a sticky that outlines the criteria necessary for a Lupus diagnosis. This will also give you some insight into the types of lab work that doctors might request and the reasons for that lab work.
    There are 11-14 (depending upon the doctor) criteria for a lupus diagnosis and you must meet at least four of those in order to get a positive diagnosis.
    Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. Diagnosis is usually made by a careful review of three factors:
    1) Your entire medical history (that is why it is good to take the list, as SITC suggested).
    2) An analysis of the results obtained in routine laboratory tests.
    3) An analysis of the results obtained from the specialized tests related to your immune status.


    2. My flare-ups have occurred very infrequently and I'm sure I won't be experiencing one on April 7, the day of my appointment. Will blood work still be effective?

    Sometimes, certain markers will still be present even if you are not experiencing a flare. Your ANA levels may still be high. The ANA is only a screening test (it is an indicator of Lupus, not a diagnosis of lupus). However, 95% of lupus patients have a high ANA. Certain medications can also cause a positive ANA.

    2a) Do my explanations of my experiences in the last few years suffice to a doctor without currently exhibiting symptoms?

    Yes they can if your lab results are also indicative of Lupus.

    3. On that line, is it possible to have "mild" Lupus?

    It is absolutely possible to have "Mild Lupus". I, myself, have "Mild Lupus" and have been that way for years. I still suffer occasional flare-ups that can last anywhere between several hours to several weeks. I still have to take precautions, I still have fatigue etc. I just do not have any involvement of my internal organs and I do not have to take a lot of medication to manage my Lupus.

    I hope that we've been able to answer your questions. Please let us know if you need anything further.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thank you both for the great information.

    I have definitely researched the symptoms, tests, etc. of Lupus, which is what has made me finally go in to see someone for it! I seem to fall into at least 4 of the criteria, but like I said, mine is very infrequent.

    I will definitely make a list of my experiences so I don't leave anything out when talking with the rheum!

    Thanks again for the help; I am glad to have found this great resource here!

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    Sare,

    Welcome. I definately hope that you are able to get the answers that you seek. It can be so frustrating when the tests are inconclusive or in my case they were not even doing the right tests.


    Take care,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Sare,

    Welcome to our forum. You will find sympathetic listeners, empathy, and kindness on this forum.

    Welcome.

    Take care,

    Faith

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