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Thread: possible lupus diagnosis...so confused

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    Default possible lupus diagnosis...so confused

    I have been having numerous health issues for quite some time now and have been to see so many doctors. I have been having extreme fatigue, joint and muscle pain. I also have a history of depression and anxiety, high blood pressure, psoriasis, thyroid problems (I had Graves disease as a teenager and now hypothyroidism), swollen lymph nodes, and a benign pituitary adenoma. I also have Raynaud's syndrome. I finally saw a rheumatologist recently who ran a lot of tests but the results were conflicting. My ANA was positive and very high and some of the orientations were suggestive of SLE, but the double stranded DNA test was negative. She thinks that SLE is possible but not too likely because of the DNA test which she said was more specific. She said that it may be that or another connective tissue disease. I am just having a very difficult time coping with things. I feel so exhausted all of the time. At least now I know that there is something physically wrong with me even if I am not sure of the exact diagnosis. Because I am tired of people thinking that I am just lazy or it is all in my head or just part of depression. A lot of the time I believed it myself so knowing it is not all in my head is a relief. But I don't know where to go from here. I have an extremely stressful job (I investigate child abuse) and I know this is making things much worse, but in this economy and my need for health insurance I can't exactly quit. I feel trapped. Most days I don't even have the energy to cook dinner or clean my house or do even the simplest of activities and I can't keep this up. It is also seriously affecting my relationship with my boyfriend who tries to be supportive but just doesn't seem to understand how bad I feel all the time. Even I'm tired of hearing myself complain so I can't really blame him. I could use some advice on coping, getting an accurate diagnosis, and personal experiences, or just someone to tell me I am not alone here...

    Thanks for listening,
    scarlet13

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    hi scarlett13,

    you are at a very frightening point in your life, and every one of here understands. Diagnosis can be very frustrating because there are auto immune diseases that coincide with each other, and are so similar, it is hard to determine which disease you suffer with. Give your dr. time, and be sure that you make a very accurate list of all symptoms that you have now and that you have ever had. Symptoms are intermittent, they come and go, and they change places on your body.

    there is no way for your boyfriend (or anyone else for that matter) to truly understand where you are. I understand you not wanting to keep talking about it to him....this is why we are here, we understand and are always happy for you to talk as much as you need.

    browse around, educate yourself on symptoms and life changes, and stay with us, we understand and will never turn our backs on you.
    Phyllis

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Scarlett;
    Making a definitive diagnosis can be a lengthy process (sometimes taking up to a year). You are fortunate because your doctor does suspect some type of auto-immune disorder, which means that she should treat your symptoms while awaiting a diagnosis. Also, in auto-immune disorders, lab tests that are negative today may be positive in a month (and vice-versa). So, unfortunately, patience is pretty much the name of the game. But, as Mountaindreamer suggested, keep a record of your symptoms, when they occur, and when they worsen. Take this record with you to each doctor's appointment (and demand that they go over this list with you) and insist that your symptoms are treated. Even though there is no definite diagnosis.
    Also, to help your boyfriend understand what you deal with on a daily basis, there is an article known as "The Spoon Theory". Many members have used this to explain to their symptoms and feelings to their loved ones. Here is the website: www.butyoudontlooksick.com
    I hope that this will be helpful to both you and him. In the meantime, everyone here is understanding and wants to help you in any way that we can. Please continue to come to us as we are always here!

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

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    Default Thank You

    Thanks for your responses. I have been reading lots of posts on here and even though I don't have a specific diagnosis yet many of them make me cry because they all sound so familiar. It is so nice to hear about all of your stories because sometimes I really don't feel like I have anyone to talk to who understands at all. My friends and family try but I know they can't come close to understanding. Sometimes I think they even believe I'm faking to get sympathy or something or so I won't have to do things. But it is real even if they can't see it. And thank you for the suggestion of writing down my symptoms, I did this right away. I go to so many dr.'s and even the good ones try and rush you out pretty quick and I'm a pretty smart gal I think but I constantly forget to ask about certain symptoms, etc when I am there. I go to see the rheumatologist again tomorrow so hopefully I will get some more answers. But this time I am going to insist that she treat my symptoms because up till they haven't been. Thanks again...

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    hi scarlett,

    so glad you are going to the dr. with your list of symptoms and with more information about lupus and treatment options.

    be sure and let us know how your appointment goes, and remember to stand up for yourself....you know your body and you know what is best for you.
    Phyllis

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