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  • Could this be Lupus?

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    Old 12-13-2003, 11:13 AM   #1
    tammylew
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    Question Could this be Lupus?

    Hi! I'm brand new to the board and, well, just don't know where to start. So here goes....I have been experiencing severe joint pain for the last 4 years, especially the fingers, right hip and my feet. I have total body weakness, have developed a conjunctivial cyst on my left eye, have scars on my arms from many places that just came up on my arms. I have tiny blood spots on my arms, shoulders, and a few on my trunk. I have leg cramps, migraines , IBS and chonic hematuria. I have been to 3 different Rheumatologists who claim they don't know what is wrong...must be stress, or depression. (I don't think depression causes hematuria!) Anyway, they scratch their hard heads and send me out for lab work, which has shown everytime to have positive ANA, elevated SED rates. But still no diagnosis. I am in constant pain and can't get a decent doctor to listen to me, look at the whole picture and then, by golly actually help me! Do they exist?? I am sick and tired of being sick and tired!!

    Thanks for letting me vent!
    Tammy

     
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    Old 12-14-2003, 08:46 PM   #2
    AngelicBrat
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    Re: Could this be Lupus?

    Hi Tammy and welcome to the board

    I am SO sorry that I missed your post!! It sounds to me like you may have Lupus. Since your Sed rate is elevated and your ANA is positive then I would say with your symptoms that you have it. What is wrong with these Rheumatologists!!!! They tell a lot of people that their problems are all in their heads. You aren't the only one Tammy, trust me. If I could count the number of people that have that pinned on them it would be well over 200 that I have encountered in the last year. It's like these guys want to put the ownership back on us! Go and read my story.. it's posted in this forum. I have "Been there, done that and I have the t-shirt" so to speak.

    I think that you need another Rheumatologist opinion. And a Rheumatologist that specializes in treating Lupus patients. Some of these docs treat arthritis and the thought of Lupus scares the heck out of them!

    I am concerned with the Neurological symptoms that you have mentioned (the pin point spots, especially the migraines and the cramping too!). Have you been tested for Antiphospholipid Syndrome? Since your ANA is positive (which I would say with your symptoms is probably Lupus) then you may have APS too. One of the hugest complaints that people with APS complain about is migraines and headaches. Do you have a history of miscarraige, stroke, TIA (mini stroke), DVT (leg clots), and things like that? The symptoms are posted in this forum.. go have a peek and see what you think. The blood work is in there too, see if your GP can at least test you to see. Then you need a good Rheumy to treat you for all this stuff before something major happens and they say "OOPS! It wasn't depression, its Lupus and APS!" I know thousands of us say the same thing about being sick and tired. It's so awful, and the worst part of the journey is getting diagnosed and treated. Please post here as many times as you need to, we are here for you I can help you with questions and concerns. Oh- do you know the "pattern" of your ANA? It might say "speckled" "homeogenous" or "centromere" or something else. Could you find that out for me too? ANd check out the APS post.. you may see that it fits like a glove for you!! Take care and vent all you want

    ~Angelic

     
    Old 12-14-2003, 10:27 PM   #3
    butterflytrans
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    Re: Could this be Lupus?

    Quote:
    Originally Posted by tammylew
    Hi! I'm brand new to the board and, well, just don't know where to start. So here goes....I have been experiencing severe joint pain for the last 4 years, especially the fingers, right hip and my feet. I have total body weakness, have developed a conjunctivial cyst on my left eye, have scars on my arms from many places that just came up on my arms. I have tiny blood spots on my arms, shoulders, and a few on my trunk. I have leg cramps, migraines , IBS and chonic hematuria. I have been to 3 different Rheumatologists who claim they don't know what is wrong...must be stress, or depression. (I don't think depression causes hematuria!) Anyway, they scratch their hard heads and send me out for lab work, which has shown everytime to have positive ANA, elevated SED rates. But still no diagnosis. I am in constant pain and can't get a decent doctor to listen to me, look at the whole picture and then, by golly actually help me! Do they exist?? I am sick and tired of being sick and tired!!

    Thanks for letting me vent!
    Tammy
    Just to add to angelicbrat's beautiful post. In order to be diagnosed with lupus, you must have four out of the 11 criteria that have been defined by the American Rheumatology Association...they are:

    Neurological symptoms (esp. seizures)
    Hematological symptoms (any of: anemia, low platelets, low white blood cells etc.)
    Joint symptoms (usually a polyarthritis)
    Positive ANA
    Immunological symptoms (any of: false positive syphilis test, positive anti-DNA antibodies, positive anti-smooth muscle antibodies)
    Serositis (usually pleuritis or pericarditis)
    Malar rash (butterfly rash on face)
    Discoid rash
    Renal symptoms (lupus nephritis)
    Photosensitivity
    Oral ulcers

    All of the above symptoms must be in the absence of some drug or other condition known to cause them.

    Now, judging from what you said, you have or could have:

    positive ANA (as you have said)
    lupus nephritis (could be a cause for your chronic hematuria)
    arthritis
    The "blood spots" or petechiae you have could be indicative of low platelets

    Do you have any rashes on your face? Is your skin sensitive to the sun? Do you have any of the other symptoms I mentioned above? I am surprised that the rheumy didn't see your positive ANA and at least THINK that you might have had lupus (esp. considering your hematuria....usually renal symptoms go together with ANA+ lupus).

    I think you should get a full lupus workup.

     
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