View Full Version : Hello again - ANA positive What does this all mean?
04-11-2008, 06:05 PM
so as i explained my story early this week, I was diagonoised with Discoid Lupus (please forgive all my spelling errors). Today I called the doctors office to find out anything I could about my blood test. I couldn't wait another 9 days until I see him. Oh and I am still seeing the Dermo, not a rheum yet. Is that normal?
The nurse said she that from what she could tell most of the test were negative but she was sure the ANA was positive. She didn't give me much else.
So what I thought would either make me feel better (no matter what the results) has now maken me feel worse. I just want to get on with it instead of being in limbo.
My question being, I read on lupus org that an ANA positive alone doensn't mean you have SLE. However I do have Discoid and aches,joint pain and fatique. plus the photosensitivy.
So after reading it looks pretty clear to me that it is SLE? Is that a pretty accurate assumption? Any words would be so helpful as I am still a week away from my doctors appt and need answers, whether they be from people who have been thru this before, Or a doctor!
The doctor has told me not to freak out (this was prior to the blood test) and not to go home and read about it on the internet. For some reason they believe that educating your self about something you "may" have is a bad thing!
I just want to know what he telling me when I finally get an answer! :?
04-11-2008, 06:14 PM
You're right. A possitive ANA does not alone make for a lupus diagnoses.
I just found out on Wednesday that I had one of my tests come back possitive and anther come back boarderline.
You're doctor must have their reasons for sending you to a dermatologist before sending you on to a rhuemy. Keep pushing for the rhuemy referal. Perhaps they want rashes biopsied so can do move of a varification, aside from the ANA test.
In Canada the family doctor can not order certain tests but the rhuemy can.
Getting a diagnoses is a double edged sword. The most important thing is that you are getting treatment. And that you are taking care of yourself.
Getting plenty of sleep and good food and moving your joints. That's right...move them...you need to do low impacted activities. Like walking, swimming. The term move it or lose it is very accurate.
04-11-2008, 06:27 PM
As SITC said...positive doesn't necessarily mean Lupus. The test is only a tool. There is the criteria 4 of 11 for Lupus..they can be accumulative. Not having all at once...
1. Malar Rash Rash over the cheeks
2. Discoid Rash Red raised patches
3. Oral Ulcers Ulcers in the nose or mouth, usually painless
4. Arthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
5. Serositis Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
6. 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)
7. Neurologic Disorder Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
8. 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.
9. Antinuclear Antibody Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
10. Immunologic Disorder Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test
11. Photosensitivity Reaction to sunlight, resulting in the development of or increase in skin rash.
Also they want to be sure it isn't another automimmune disease...they mimic one another..before they label you. They should be able to treat you symptoms with out a defining diagnose...
Researching Lupus and other similar diseases can be overwhelming, scary. I was scared, still am. I adapt, I change to accomodate the disease. Read more on how to prevent flares, the care...instead of what it does...
Take charge now.
Eat well, and eat clean..Exercise lightly...avoid the sun..Avoid sugar products...avoid alfalfa sprouts. Manage stress... during this 9 day wait...
The ninth day will come soon enough, so don't wish or hurry your days away. Enjoy them....
04-11-2008, 11:02 PM
It actually is not uncommon to be referred to a dermatologist BEFORE being referred to a rheumatologist. This is another step in the diagnostic process and must be done in order to eliminate other possibilities. The dermatologist is usually the one who will biopsy a lesion, compare it with a part of your body that does not have a lesion and does not often see the sun (for me, that was my butt) to see if the lesion is, indeed, a lupus lesion.
Oluwa has given you the criteria needed in order to make a Lupus diagnoses and doctors are loath to speculate until they have completed all of the diagnostic criteria. For some of us, it took upwards of a year before we got a definitive diagnosis. So, the waiting game seems to be par for the course! A positive ANA is only one factor that must be considered and cannot be used, alone, to determine if you do, indeed, have Lupus. :cry:
Peace and Blessings
05-21-2008, 06:16 PM
Did you get lost when the site went down for several weeks? We're here...
Thinking of you and wondering how you are...in limbo still? I hope not...it can wear on oneself.
Did you find out the exact results of your test? Been to the Rheumatologist yet? What did the dermatologist say?
05-22-2008, 07:08 PM
thanks for asking, I went to an internist a month ago ( need a new doctor mine was retiring) anyway I talked with her about my results from the dermo, since he has been no help. She wanted the results from him before she would discuss my diagnosis regarding the systemic. That appointment is wednesday.
It just seems like waiting and more waiting..... I will keep you updated!
05-22-2008, 07:49 PM
Hey you, Keea,
The wait is awful...then the wait in the waiting room.,,sheesh, I left high and dry from one today...sigh. I think I put myself in a pickle, because that one was for my spine. I wonder if they notice I left...
I have one on the 28th also, actually two that day, gastro and rheuma...I will share with you too.
Hope you find out something....or at least get your symptoms treated.
Maybe you want to pick up a copy of your results and carry it with you to your appointment.
Enjoy your sleep,