View Full Version : Hi...i am worried!

01-03-2009, 07:44 PM
:( Hey, my name is lisa, i was doing some research on lupus and came across this forum which i must say is very informative, so i joined. I am 26 years of age, and for the past three years i have been getting some very wierd symptoms.

In the year 2006, my legs from my knee go down to my ankles started to swell, immediately after i started to get this intense lower back pain that up to this day is still present. I however have a mild case of scolosis growing up. Together with this welling my hair started to fall out...i was really terrified, went to my GP and other GP's whom did blood count that came back normal. They told me that i have varicose veins and gave me dafflon for it...but yet is ee no signs of veins :? For my hair i was continoulsy given calcium and painkillers for the backpain and that was it. (also went to dermatologists, gynaecologists, eurologists and back specialists...found nothing]

In 2007, i started to get rashes and realised that this back pain is just getting worst and my costochondritis was in a flare so i went to another doctor who decided to do an ana test. It came back positive with a titre of 1:40 and the ANF reading +fine speckled pattern. He recommended me to a rheumatologist who did further test such as anti-dna, ena, c3 and c4 which came back negative and my blood count was normal. A few mths after that i started to get muscle aches, needle like pains on the left side of my legs and arm (happened on a few times), heaviness in my forehead, regular itchy rash on my neck and hand.

In the past growing up i realised i was always sensitive to the cold cause my finger nails would turn bluish in colour and since i was 15 i began to see floaters. I dont know if all this is connected to lupus.

Today i got back results for some blood tests again....anf being 1:40 positive ++coarse speckled pattern, RH and CRp negative, CPK and ESR normal but i realise my RBC abnormal and i am seeing something as 1+ hypochromia (is that anemia?) never had that before! My rheumatologist re-ordered the anti-dna, ena, c3 and c4. He said that its wise to do over these tests every 6mths to rule out diseases.

AM i leading to lupus here? Is this a strong case enough to indicate that i may have it? :(

01-04-2009, 02:30 AM
Hi Lisa and welcome to the site.

Lupus can be difficult to diagnose. I am well in to two years of trying to get answers and still do not have a diagnosis.

My mother had lupus and my sister has it as well. I have butterfly rash, joint issues, light sensativity and have had a mix of possitive, negative and boarderline ANA tests, and a host of other issues.

Lupus is a possibility, but don't dispare. The main thing is to find out and get treatments that work for you.

Even though I'm not diagnosed, I am on medications that are helping quite a bit.

I too have swelling issues in my legs and feet. It took awhile to find the right mix of medications to help control that and the pain. I am able to walk comfortably now, even though down hill skiing is out of the question...ok so down hill skiing was never a priority :lol:

How is your swelling? Is it under control?

You spoke of a heaviness in your forehead, have you mentioned that to your doctor?

01-04-2009, 05:07 AM
Hi Lisa,
Welcome to the site. I just read your post and I have to ask if you have a problem with dry mouth or dry eyes due to the speckle patterned ANA. It could be Lupus or Sjogrens. Have they run a test to see if you have a positive SSA and SSB antibodies, which they would call anti-RO or anti-LA antibodies. You could have Lupus and Sjogrens or just the Sjogrens by itself. I hope that you can get some answers. Please keep posting. There will be others that come in here with some good information that may also help you.


01-04-2009, 08:46 AM
Hey thanks for the welcomes and information. Althought your information is very helpful I was hoping you guys tell me I may not have it, but I know that I have symptoms of this dredful disease.

No I havent had dry mouth or dry eyes. There was a few years that i had one salivary gland infection that made my mouth really dry, got antibiotics and it never came back. But there were on and off ocassions that the glands in my throats hurt, thinking maybe it was the virus because it accompanied soar throat.

My leg swelling has become less of a problem. When it first started i went on herbal medicine 'Lyon Legacy Internatonal' Lymph support tabs for the swelling and it did help. Only had two bottles and that was it. Rarely i observe swelling, but would occur if i am standing alot.

As for the heaviness in my forehead i did mention it to my doctor and he said it may be neurological, but lets first do over some tests to and then we will deal with that by sending me to a neurologist (since i get needle like pains as well). Theheaviness only started a month now.

Kathy i already did those tests but next week i have to do them over since it was done less than 6 mths ago. Here were the results on 12 August 2008:

ANTI-DNA (1:10 dilution) - negative
Antigen - negative
NRNP/SM - negative
SM - negative
SS-A - negative
SS-B - negative
SCL-70 - negative
JO-1 - negative

But since my ana/anf came back 1.40 ++coarse speckled last month, i have to re-do these tests. Could anyone tell me if these tests happen to come back negative (I am Hoping) what else could it mean that i have? Would lupus be ruled out and what possible disease is there again to look for?

01-04-2009, 09:44 AM
A positive ANA can indicate several auto-immune disorders. ANA does not, by itself, indicate Lupus. But, on the other hand, a negative ANA does not rule it out.
Lupus is a very, very difficult disease to diagnoses as symptoms change, some go away only to be replaced by others and the disease waxes and wanes. Often, doctors have to wait for symptoms to develop in order to run lab tests that will tell them what is going on.
Doctors have to interpret your test results, then correlate them with your symptoms and other test results. It becomes even more difficult if you exhibit vague symptoms and clashing test results. A good rheumatologist can put the pieces of the puzzle together and determine whether you have lupus or something else entirely.
ANA titers and patterns can vary between laboratory testing sites, perhaps because each site may have its own methodology. However, these are the commonly recognized patterns:
* Homogeneous - total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus).
* Peripheral - fluorescence occurs at edges of nucleus in a shaggy appearance. Anti-DNA antibodies cause this pattern. Also common in SLE (lupus).
* Speckled - results from antibody directed against different nuclear antigens.
* Nucleolar - results from antibody directed against a specific RNA configuration of the nucleolus or antibody specific for proteins necessary for maturation of nucleolar RNA. Seen in patients with systemic sclerosis.

ANAs are found in patients who have various autoimmune diseases, but not only in autoimmune diseases. ANAs can also be found also in people with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease. ANAs are actually found in about 5% of the normal population.

The ANA results are just one factor in diagnosing, and must be considered together with your clinical symptoms and other diagnostic tests. Your medical history also plays a role because some prescription drugs can cause "drug-induced ANAs".

Statistically speaking the incidence of positive ANA (in percent) per conditon is:
Systemic lupus erythematosus (lupus or SLE) - over 95%
Progressive systemic sclerosis (scleroderma) - 60-90%
Rheumatoid Arthritis - 25-30%
Sjogren's syndrome - 40-70%
Felty's syndrome - 100%
Juvenile arthritis - 15-30%

Here is a list of some of these diagnostic tests (remember, all of them are merely screening tests, or tests that help your doctor when used in conjunction with other tests and clinical symptoms, to help piece together the puzzle);

Complete Blood Count (CBC):
The complete blood count (CBC) screening test has many applications, and it can help identify a wide variety of diseases. The CBC is used to measure red blood cell and white blood cell count, total amount of hemoglobin in the blood, hematocrit (the amount of blood composed of red blood cells) and mean corpuscular volume (the size of red blood cells). The CBC can count additional blood cell types like neutrophils, eosinophils, basophils, lymphocytes, monocytes, and platelets.
Results from the CBC can help detect problems such as dehydration or loss of blood, abnormalities in blood cell production and life span, as well as acute or chronic infection, allergies, and problems with clotting.

Erythrocyte Sedimentation Rate :
The erythrocyte sedimentation rate (ESR) test measures inflammation in the body and is used to help diagnose conditions associated with acute and chronic inflammation, including lupus. It is usually used in conjunction with other tests, as the test itself is nonspecific for any disease. In other words, it can detect increases in inflammation, but it does not pinpoint where the inflammation is or point to a specific disease. Other conditions can affect outcomes of the test, as well. The test is one that is usually conducted several times over a certain time period to measure changes in inflammation. Changes in ESR over time can help guide your doctor in attempting to make a diagnosis.

* Moderately elevated ESR occurs with inflammation, but it also occurs with anemia, infection, pregnancy, and old age.
* A very high ESR usually has an obvious cause, such as a marked increase in globulins that can be due to a severe infection.
* A rising ESR can mean an increase in inflammation or a poor response to a therapy.
* A decreasing ESR can mean a good response (though note that a low ESR can be indicative of diseases such as polycythemia, extreme leukocytosis, and protein abnormalities).

Complement Levels :
The complement system is the name of a group of proteins that move through your bloodstream, and complement levels -- as the name implies -- measure the activity of those proteins. Working within the immune system, the proteins play a role in the development of inflammation. The test is often used to monitor patients with lupus and other autoimmune diseases to see if treatment is working. Though it can point to a number of conditions, a decreased complement level can point toward SLE and lupus nephritis.

Antinuclear Antibody Test (ANA) :
The antinuclear antibody (ANA) test is used to detect autoantibodies that react against components of the nucleus of the body's cells. While most people with lupus test positive for ANA, medical conditions such as infections, other autoimmune diseases and false positives can also produce a positive test result. For this reason, your doctor may order some other blood tests to correctly diagnose SLE.

Other Autoantibody Tests:
Usually in conjunction with the ANA test, your doctor may ask that you take other tests that can help determine the presence of three specific types of antibodies: anti-dsDNA (anti-double-stranded DNA), anti-Sm (anti-Smith antibodies), and anti-RNP antibodies. The anti-dsDNA and anti-RNP tests confirm whether there are antibodies being produced to the genetic material in the cell. The anti-Sm test measures if there are antibodies against a certain protein found in the nucleus of cells. When either the anti-dsDNA or the anti-Sm antibody test is positive, a person is usually considered to have SLE. Knowing which particular antibody is responsible for the positive ANA test can help determine which autoimmune disease is present.

Lupus Anticoagulant Antibody Test:
Lupus anticoagulant antibodies react with proteins bound to phospholipid, a type of fat molecule that is part of the normal cell membrane and found in the blood stream. They are also categorized as antiphospholipid antibodies.
These antibodies interfere with the normal function of blood vessels and can lead to narrowing of the blood vessels or blood clots. These complications can lead to stroke, heart attack, and miscarriage.
While lupus anticoagulants are typically discovered in systemic lupus erythematosus patients, they are also known to occur in people with other autoimmune diseases, certain infections, and tumors, as well as in people who take certain medications, including phenothiazines, phenytoin, hydralazine, quinine, amoxicillin, and birth control pills.

Urinalysis :
This screening test is used to detect substances or cellular material in the urine associated with metabolic and kidney disorders. It is a routine test, and doctors utilize it to detect abnormalities -- abnormalities that often appear before patients suspect a problem. For those with acute or chronic conditions, regular urinalysis can help monitor organ function, status, and response to treatment.

Peace and Blessings

01-04-2009, 09:55 AM
Hi Lisa,
I was thinking about your post and your ANA test is a very weak positive. Some doctors would even call it negative. I wish that I could tell you that you don't have Lupus and I hope and pray that it turns out that you don't have this rotten illness. Please post and let us know what the doctors tell you ok.


01-04-2009, 11:14 AM
:D hey thanks alot folks, you have no idea how much of a great help you all have been educating me about lupus. :wink: And i will definitely keep all of you informed.

Althought my ana remained at 1:40 on the second testing, the ANF pattern changed from +fine speckled to ++ coarse speckled. One question though what does it mean to have a one plus speckled or a two plus speckled? I dont understand that? But from what i see the pattern got worse didnt it?

01-04-2009, 03:26 PM
Hi Lisa,
I don't know what that would mean about the 1 plus or 2 plus speckled pattern. Saysusie may know about that. I know that when I first got diagnosed my ANA was 1:320 speckle pattern, but I don't remember seeing a 1 or two plus. I also have Sjogrens with the Lupus as an overlapping illness. I hope that this helps somehow.


01-05-2009, 04:05 PM
ANAs present different patterns depending on the staining of the cell nucleus in the laboratory: homogeneous, or diffuse; speckled; nucleolar; and peripheral or rim. While these patterns are not specific for any one illness, certain illnesses can more frequently be associated with one pattern or another. For example, the nucleolar pattern is more commonly seen in the disease scleroderma. The speckled pattern is seen in many conditions and in persons who do not have any autoimmune disease.

The preferred method of testing for ANA is the immunofluorescent (IFA) technique, which is considered the gold standard. Alternative methods such as the enzyme linked ELISA method are more likely to cause false positive results. Another benefit of the IFA ANA test is that the ANA detected in the IFA results yield distinctive staining patterns in the nucleus or cytoplasm of the reagent cells used to perform the test. These staining patterns offer specific clues as to which particular antinuclear antibody or antibodies may be present.

The specific autoantibody that's present, in turn, gives the physician information as to what autoimmune disease may be present or what other specific autoantibody tests need to be performed. In some cases, more than one autoimmune disease (overlap syndromes) may be present, which causes more than one ANA pattern to be present in a sample.

Some patterns are more specific for particular diseases than others. For example, in SLE, a homogeneous pattern is present, whereas a nucleolar pattern is seen in scleroderma and a centromere pattern in the CREST variant of scleroderma. The type of pattern determines what antibodies might be present. For instance, in a homogeneous pattern, anti-DNA antibodies are possible and this test would be recommended, whereas it would not be recommended in patients who have a speckled pattern ANA. The most common secondary antibody tests performed based on ANA results include: anti-DNA, anti-Sm, anti-RNP, SS-A and SS-B.

The homogeneous/rim ANA pattern can be caused by: antibodies to double and single-stranded DNA (seen in SLE in high titers and in lower titers in other rheumatic diseases),; and antibodies to histones (seen in drug-induced lupus), and deoxynucleoprotein (seen in SLE). A speckled pattern can be caused by the following antibodies: Smith (Sm), which is diagnostic of SLE; nuclear RNP, which is seen in high titers in mixed connective tissue disease (MCTD) and SLE; SS-A (Ro), which is seen in Sjogren's syndrome and SLE; and SS-B (La), which is seen in Sjogren's syndrome.

The centromere pattern of ANA is seen in the CREST variant of scleroderma, which will be described in an upcoming article. A nucleolar pattern is caused by the following antibodies/antigens: RNA polymerase I, which is highly prevalent in scleroderma; fibrillarin and also DNA topoisomerase I (Scl-70), which are both seen in scleroderma; and PM-scL, which is seen in polymyositis. An MSA pattern is caused by antibodies to mitotic spindle apparatus and NuMa; these antibodies can be seen in carpal tunnel syndrome, SLE, and Sjogren's syndrome; the cytoplasmic nucleolus pattern is seen in polymyositis.

While these patterns offer excellent diagnostic clues for autoimmune diseases, antinuclear antibodies may be negative during periods of low disease activity or remission. Because titers of these antibodies tend to rise during flares of disease activity, specific antibody tests as well as ANA titers can be used to measure the response to treatment and disease prognosis.

I hope that this has answered your question. Please let me know if you need anything more.

Peace and Blessings

01-05-2009, 07:56 PM
Saysusie Quote:
The specific autoantibody that's present, in turn, gives the physician information as to what autoimmune disease may be present or what other specific autoantibody tests need to be performed. In some cases, more than one autoimmune disease (overlap syndromes) may be present, which causes more than one ANA pattern to be present in a sample.
Ok so the one plus moving to the two plus cpuld mean that i could have more than one autoimmune disease then? Overlap syndromes? Is that what the two plus mean? Would it be safe to say that i have both the sine and coarse speckled? I dont know if this makes sense, maybe i am being to analytical :( I just want to understand my results better. Alot of patients dont understand anytihng much because their doctors fail to explain properly.

Ssysusie, thanks alot for your great help, you should be a rheumy...lol..very educative you are...Keep up your great work! :D

01-06-2009, 09:22 AM
While it is quite possible that you, as many of us, do have more than one illness occurring at the same time (aka: overlap and/or secondary illnesses), I cannot tell you specifically if this is what your ANA pattern is distinguishing. As I mentioned before, more than one pattern can appear which usually indicates that there are overlapping illnesses occurring.

I will say that it is very rare to have Lupus with NO overlapping illnesses. You won't find very many of us who suffer from Lupus alone (like having Lupus is not enough to deal with!).

I'm sorry that I can't be more specific. This is an issue that you will have to discuss with your doctors.

Peace and Blessings

01-07-2009, 05:26 PM
well thanks again for all the help...i will let you guys know what is the outcome soon ok... :wink:

01-19-2009, 06:23 PM
Hi to all, i feel as though i am back to nowhere...... :cry: Every other result except my ana came back negative. Today i got my ds dna, ena, c3, c4, esr, rh factor, Le cells, cpk, and c -reactive protein all came back normal/negative. The only thing positive is my ana being 1:40 speckled. So what now? Can i still have lupus? I feel as though i am not getting anywhere with whats wrong with me. What if i get so sick that it would be too late for me when they finally find my diagnosis? More worried than before! :cry:

01-20-2009, 03:06 AM
I feel your frustration :!: It is so hard when you are looking for answers and not getting them. I always felt like I was left with more questions than answers. You know something is going on with your body but no one can tell you what it is and how to feel better. Have they put you on any medications for the symptoms you are having :?:

01-24-2009, 11:20 AM
I have to agree with Danaica in asking if they have prescribed any medications.
It could be that you are suffering from an auto-immune disorder, but it may not be Lupus or, whichever disease it is, it may not have fully developed yet. Diagnosing Lupus (and other auto-immune disorders) is very difficult and can take up to a year (My diagnosis took a year), before anything definite is diagnosed. These diseases have a tendency to sometimes develop slowly; blood work can be positive one month and negative the next; the symptoms that you have today can disappear only to be replaced by new symptoms tomorrow.
Many diagnostic techniques include the "wait and see" protocol. Doctors want to wait to see what symptoms develop, what lab results change, and what other markers for disease activity present themselves, before they will make a definite diagnosis. However, most doctors will prescribe treatment for your symptoms while you are in the diagnostic process.
If your doctors have not prescribed treatment for you, please insist that they do. Also, since they are suspecting an auto-immune disorder, they should treat you accordingly.

I wish you the very best!
Peace and Blessings