View Full Version : new; in need of a little guidance
01-10-2008, 11:56 PM
My name's Alanah, and I'm 17. I had my bloodwork done for the first time and my labs came back very much abnormal and I have an appointment with my primary physician on the 24th. I had some difficulty deciphering what the lab work actually meant, but i know my rhuematoid factor was around 250 when it should be like less than 14, and my ANA something came back positive; these are just the main things I remember from my report. I know how difficult it is to diagnose lupus, and my mother, who was diagnosed with it after I was born, told me the appointment would likely consist of questions about all my ailments to better diagnose me. I was wondering if it seemed likely that i'd start medication then, cause I'm really struggling right now.
I got a stomach virus the past weekend, which was very much not fun, and my appetite suffered as a result. I want to eat but, I just can't eat as much as i should be. I have no energy, and just getting through a school day is completely exhausting. It's even worse cause i have a really demanding schedule, and with all the stress piled on top of thinking about the possiblilty of being diagnosed with both lupus and rhuematoid arthritis, its just too much for me. Any suggestions on how to deal with all this stress? Cause I know its making me sicker, but I really can't help it...
01-12-2008, 01:29 AM
Hi, Alanah. It's no fun to feel so lousy at any age, but it must really be hard when you're just 17. I'm so sorry you're having a tough time. Is there someone you can talk to about your stress - someone you can share your feelings about your illness? It's a stressful time for you - and you're right - you do need to manage your stress. We're here for you - this forum is a great resource. But, you will want to find someone nearby that can be there for you, too. A support group? A counselor or teacher at school? Your Mom? Next time you see your doctor, ask about support groups. I hope you find some answers, and someone to help you deal with all of this. Sending you a (((((cyber-hug)))))
01-13-2008, 11:01 AM
Mnjodette pretty much covered what I would also suggest. Please know that we are here for you whenever you need help or just need to alleviate some stress by venting.
You positive ANA test is an indication that you might have an autoimmune disease (such as Lupus). There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease. Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. Almost all people with Lupus have a positive ANA (however, there are a small percentage of people with Lupus who have a negative ANA).
Usually, doctors will not make a diagnosis of lupus unless they determine that you have at least four of the eleven criteria for a lupus diagnosis. If only two or three criteria are met. Since not all of the criterion are black and white, your doctors may be uncertain whether you meet a particular criterion or not. This adds to the difficulty in diagnosis.
If your ANA is positive and you have many other symptoms, your doctor may suspect some kind of connective tissue disease. If, at that time, there aren't enough symptoms and lab work to satisfy the criteria for any one disease, then it is impossible to specify a particular disease or to confirm a diagnosis. Lupus tends to develop slowly and evolve gradually over time. Many-or even most-people who have just a few of the criterion for lupus never develop this or any other connective tissue disease, and sometimes their symptoms improve or they just continue as they are.
As I said, more than 95% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies (such as anti-phospholipid antibodies, anti-Ro, anti-SSA) or their ANA converted from positive to negative from steroids, cytotoxic medications, or uremia (kidney failure).
A positive ANA is determined by a high titer. A titre (ti-ter) is the number of times a solution (such as a person's blood) can be diluted before a substance (such as an antibody) can no longer be detected. Thus, an ANA titre of 1:80 means that the blood can be diluted to one in eighty parts and the lab technician can still detect the ANA antibody. The dilutions are usually two-fold, so that the next dilution would be 1:160, and the one after 1:320.
Because normal ranges for ANA titres vary from lab to lab, there is no universal normal range. There is no limit to how high the ANA can go.
Awaiting a diagnosis can be frustrating. If only one or two criteria are satisfied, it's similar to a picture that's only partially developed. No one looking at that picture can accurately identify it. Nor can they predict if it will develop into anything that can be identified, how long it will take before it is developed enough to identify, or if it will develop further at all!
There is no way to hurry the diagnosis of lupus. The length of time it takes can be highly variable; it may take weeks, months or years. In some cases, it can take as long as 10 years before enough evidence accumulates indicating that it is, in fact lupus.
However, your doctors can begin to prescribe treatments for you symptoms, even though a positive diagnosis has not been made. The standard treatments are usually Plaquenil (for fatigue and skin manifestations), Prednisone (to suppress the over-active immune system); and NSAIDs (for pain management). Talk to your doctors about possible treatment for your symptoms while awaiting a diagnosis.
In the meantime, we are here to help you as much as we can.
Peace and Blessings
01-15-2008, 11:52 PM
Thank you for all your kind words and information. It is really helpful. I've been talking to my mom more about what medications i might be put on, and more on what to expect. So that's helping. I'm still really anxious for my appointment.
But i was curious, Saysusie, you mentioned there were eleven criteria for lupus, what are they? So even if i'm not diagnosed thursday, i should just be patient, and hope they give me something for the time being. Is rhuematoid arthritis progressive? Cause i can't shake the feeling that i'm losing more mobility in my hands. You dont realize how much you really need to use your hands until they quit out on you...
01-16-2008, 10:36 AM
The criteria are listed in Newly Diagnosed. It was originally delineated in 1972, but was revised in 1982. I will re-print them here for you:
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).
The 1971 preliminary criteria for the classification of systemic lupus erythematosus (SLE) were revised and updated to incorporate new immunologic knowledge and improve disease classification. The 1982 revised criteria include fluorescence antinuclear antibody and antibody to native DNA and Sm antigen. Some criteria involving the same organ systems were aggregated into single criteria. Raynaud's phenomenon and alopecia were not included in the 1982 revised criteria because of low sensitivity and specificity. The new criteria were 96% sensitive and 96% specific when tested with SLE and control patient data gathered from 18 participating clinics. When compared with the 1971 criteria, the 1982 revised criteria showed gains in sensitivity and specificity.
Peace and Blessings