Find a Diagnostic Test

I had a thought - maybe it's not an original one, but it is new to me.

Doesn't it make sense that doctors and scientists need to find a definitive diagnostic test for Lupus (blood work, x-ray, biopsy, urine sample, etc)?  

The ANA can come back negative if the patient is not in a flair during the blood draw.  It can also come back positive on people that do not have lupus.

The Double Stranded DNA comes back inconclusive in 8 out of 10 patients.

Other than that, all doctors have is a list of 11 criteria, of which a patient needs to exhibit 4 of the symptoms in order to be diagnosed with the "possibility" of Lupus.  The problem is that the symptoms begin (for most of us) very slowly and sporadically and doctors don't connect the dots because it may be months or years between one symptom and the next.  So, unless you are exhibiting at least four of the symptoms on the list at the time of your appointment, they don't even know to investigate the possibility of this horrible disease.  Therefore; we are left suffering and misdiagnosed.

If you are not familiar with the list of 11 criteria, they are as follows:

The “Eleven Criteria”

  1. Malar rash: butterfly-shaped rash across cheeks and nose
  2. Discoid (skin) rash: raised red patches
  3. Photosensitivity: skin rash as result of unusual reaction to sunlight
  4. Mouth or nose ulcers: usually painless
  5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
  6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
  7. Neurologic disorder: seizures and/or psychosis
  8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
  9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
  10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
  11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

(The "Eleven Criteria" was copied from an article from the lupus research institute.  For more information, please visit their website at http://www.lupusresearchinstitute.org)

I currently exhibit 5 of these criteria  (plus many others).  I have a new doctor and she ran my ANA again and guess what?  It came back negative!  So, she informed me that in her opinion doctors get in too big of a rush to diagnose Lupus.  Hello?  RUSH?????  I have been sick since 2009 (that I know of) and I have had multiple "unexplained" illnesses throughout my lifetime, that I feel were probably the wolf hiding in my body.  

Believe me!  I would LOVE, LOVE, LOVE it if I did not have this disease!!!!!  But if I don't - then what IS wrong with me and why aren't you fixing it????

I know that there are many lupies out there like me - I can no longer work a full time job.  I can't sit all day, nor can I stand.  Sometimes I can't speak clearly, so that rules out customer service or call centers.  I can't always get out of bed on time or at all - who wouldn't fire me for that?  The fatigue is something I fight a losing battle with - I can fall asleep in the middle of a sentence or while driving.  The list of why I can't hold down a job goes on and on.  I have worked all my adult life and it is embarrassing to apply for disability.  I feel that I am asking for charity.  I feel like people look down their noses at me.  I feel like people think I am just lazy.  I am not lazy!  

I finally applied for disability in January, 2012, after my doctor, husband and family begged me to do so.  I was denied my initial application, denied reconsideration and denied again at my hearing.  I am now awaiting the decision on my appeal as to whether I will be granted another hearing.  It's hard to get a favorable decision from the disability judge when you have 2 negative ANA's and 2 positive, a "inconclusive" Double Stranded DNA test and 4 different doctors with 4 different opinions about what "may" be my diagnosis.

I really think that the answer to finding a cure for Lupus is to FIRST find a definitive test for it.