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mamashell
06-30-2008, 09:13 AM
the rheum. doctors office called today with my test results, i already had possitive ana, so they did more lupus tests, they said they all came back fine. I am going for a ct scan of my neck and chest. my throat is swollen and can't swallow, and it hurts my left lung when i breath deep. i am oddly enough dissapointed in blood test results, i have been going to doctor for some time now and i thought they finally figured it out. Everything i have read sure made sense as far as lupus and how i feel. very sad. i feel like i am still at square one. don't know what to think.

KathyW1958
06-30-2008, 09:18 AM
Hi.

I am sorry to hear the you are feeling so bad. You know a lot of doctors do not only rely on lab tests to diagnose Lupus. They have 11 criteria that they go by. Do you have an appointment with the doctor that ordered the tests? I am just curious and hope that you can get the help that you need to feel better. God Bless.

Kathy

mamashell
06-30-2008, 10:29 AM
have an appointment in a month. i know it probably seems weird that i am dissapointed, i mean, its good if i dont have lupus. but that means i still don't know what is wrong with me. you know when there is something very wrong with your own body. there has been for some time. i am just so eager to figure it all out.

KathyW1958
06-30-2008, 10:46 AM
Hi

I can definitely relate to how you feel. For years I had symptoms and the bloodwork did not support my symptoms either until the Lupus had gotten much worse. I want to list the symptoms that they tend to use in diagnosing Lupus. You can figure out which ones pertain to you and you can bring them to the attention of your doctor. I hope that this helps, because nobody knows our body better then we do. Well here is the list:

Classification criteria for systemic lupus erythematosus:1

Butterfly (malar) rash on cheeks

Rash on face, arms, neck, torso (discoid rash)

Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)

Mouth or nasal sores (ulcers), usually painless

Joint swelling, stiffness, pain involving 2 or more joints (arthritis)

Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)

Abnormalities in urine (test results show increased protein in the urine or clumps of red blood cells or kidney cells, called cell casts, in the urine)

Nervous system problems, such as seizures or psychosis, without known cause

Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells

Positive antinuclear antibody (ANA) test

Laboratory tests indicating increased autoimmune activity

Initial diagnosis and disease monitoring

I hope that this will help you when you see the doctor again. Print out the list and list all of your symptoms that they pertain to.

Hugs,
Kathy

sits_inthe_corner
06-30-2008, 11:50 AM
Hugs mamashell

I've had all my blood work coming back saying I'm perfect, couldn't be healthier.

But you just need to look at me to know there's something not right.

My doctor told me a few weeks ago that she had missed a possitive ANA test and a boarder line one.

Bottom line is, that ANA test doesn't mean diddley squat. I still do not have a diagnoses and I seem to be going further and further down the garden path, trying to figure out what the heck is going on with me.

I share your frustration. I hope you get your answers soon.

Untill then we are all here for you :)