Results 1 to 6 of 6

Thread: Question about Lupus

  1. #1
    Join Date
    Jul 2008
    Location
    Washington State
    Posts
    4
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Question about Lupus

    Hi,
    I was wondering if someone could answer a question I have. I was tested for Lupus about 4 years ago with the onset of symptoms, and the results were negative. (Some sort of blood test) But my symptoms have progressed and match Lupus so well, that I wonder if I tested to early... Is that possible? I do not want to go back to the doc unless I think it is a possibility, as they start looking at you like you are mental, and I need them to take me seriously. Any info is appreciated... Thank you in advance.

    Weebeadyeyes :roll:

  2. #2
    Join Date
    Oct 2004
    Location
    Illinois
    Posts
    955
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Diagnosing autoimmune conditions can be difficult - but if you are having symptoms, talk to your doctor, explain what you are feeling and the changes you may be experinecing with your body. If your doctor says "its all in your head" and wont' test, I'd encourage you to find a doctor who will listen to you.

    Many of us spent years seeking a diagnosis for the issues we were having. Others (like me) had a physician who listened, who ordered the right tests, and knew that I wasn't making the whole thing up. And still others were given one diagnosis early on, only to learn over the course of years that the initial diagnosis was either incorrect or incomplete. Life is truly a journey.
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

  3. #3
    Join Date
    Jul 2008
    Location
    South Florida
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Some doctors will dismiss your symptoms but i believe that if you are truly experiencing 4 or more of the lupus symptoms then you should try to visit a Rhumy, even though doctors can be costly your health is more important. Lupus is something you dont want to ignore or any other life threatening disease. I say get atleast 3 diff opinions, if all docs say no, then just wait it out and see, but if any of them say yes, then keep researching yourself to make sure, and pray about it.
    Good luck and god bless!
    Lord Jesus Christ, be near me in my time of weakness and pain; substain me by your grace, that my strength and courage may not fail; heal me according to your will; and help me always to believe that what happens to me here is of little account if you hold me in eternal life, my Lord my God. Amen

  4. #4
    Join Date
    Jun 2008
    Posts
    915
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Wee,
    I hear where you are coming from big time. It took me years to get the doctors to listen to me and take me seriously. I mean it was really awful. I had one doctor tell me to go out and get drunk, because I was worrying and stressing needlessly. That man got turned into the AMA and got into trouble for that. I had another doctor tell me to go to the beach and get a sun tan. It was unbelieveable. I finally got so fed up with being so sick and being blown off that I went to a GP and demanded that I be tested for Lupus or he would not get paid. He ordered all the tests he could think of for Lupus and Thyroid that he could think of and bingo the test showed pos for Lupus, but not for any thyroid involvement. He immediately sent me off to see a Rheumatologist who confirmed the dx and put me on medications. That was 14 years ago. I learned the hard way that you have to stand up for yourself and remind the doctor of who is paying them for their services and if they do not want to listen to you then they don't get paid. That gets their attention fast. Good luck and try to get to see a Rheumatologist as soon as possible.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  5. #5
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Weebeadyeyes....

    Information...

    From the American College of Rheumatology (ACR)...Four out of eleven is needed. Not all symptoms occur at once...and spread out over years, so maintain a journal too will be helpful.

    Malar Rash ...Rash over the cheeks

    Discoid Rash ....Red raised patches

    Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash

    Oral Ulcers ...Ulcers in the nose or mouth, usually painless

    Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

    Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

    Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

    Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

    Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

    Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).


    An antinuclear antibodies (ANA) test is done to help identify problems with the immune system, such as....or rule in or out other diseases...some, not all I have listed..such as
    Rheumatoid arthritis.
    Lupus
    Polymyositis.
    Scleroderma.
    Sjögren's syndrome.

    A positive ANA doesn't mean Lupus, nor does a negative mean not. 3 - 5% of the people can have a negative ANA and still have Lupus. Lupus is a great mimicker of other diseases, so they should rule out others before diagnosing.

    Keep looking for your wellness.
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

  6. #6
    Join Date
    Jul 2008
    Location
    eastern KY
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hey there. My drs did seem to listen to what I had to say but my first test was negative. Over the course of the next 18 months or so I developed other symptoms and after being sent from dr to dr I got a rhuematoligist and he retested everything.....the ANA test was positive that time.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •