View Full Version : Not even sure...

10-23-2006, 08:28 PM
Today I got my blood drawn for an ANA. I haven't been diagnosed yet, but I came here because I'm confused and scared and biting my nails waiting on this result. I've been through a diagnositc rollercoaster over years and no one seems to know what's wrong with me.

When I was 13 or 14 I was taken to the GP doctor for a red rash on my face. He told my mom that it was a kind of acne, and that it would clear up after my teen years. It hasn't cleared up. It comes and goes, sticking around for periods of a couple of hours intermittantly for weeks or months, and then is gone. I have no idea if this is a malar rash or not. It feels hot, comes with a fever, and ussually accompanies a period of chest pain or seizures or both.

I had paracarditis when I was 19, no other apparent health problems, and have had chest pain (sometimes enough to send me to the emergency room or keep me in bed) ever since. I developed mood symptoms and occasional short duration acute psychotic episodes shortly therafter and have been treated for what they thought was an odd case of bipolar I.

Then about six months ago I got a new psychiatrist, and he told me I'm having seizures and I'm not really crazy, as such, because the psychosis is organic. And a neuro tested me, and yep. Seizures. Then the neuro put it all together, rash, pericarditis, chest pain, seizures, mood disorder. He says I might have NPSLE.

I guess I'm just really scared, and I don't know where to turn. I'm not even sure if the test has false negatives or false positives.

Sorry .. I feel like I'm whining, and I don't like that, I'm just not sure what to do.

10-24-2006, 07:22 AM
You have nothing to apologize for - waiting for a diagnosis is scary and frustrating, you wait to know what's wrong, but at the same time you're afraid of what the answer will be.

NP-SLE neuropsychiatric lupus - is a subset of an autoimmune disease called systemic lupus erythematosus, generally shortened to lupus or SLE. In an auto-immune disorder, the body's immune system, which normally protects you from infection and illness, starts to produce an immune response to its own tissues, attacking them as if they were foreign tissue or germs. It's as if your immune system loses the ability to tell the difference between your body's own tissues and foreign substances, so it starts to manufacture antibodies against its own organs and tissues. Antibodies are proteins that attack "foreign" substances and cause them to be removed from the body. The immune system also produces special blood cells called T lymphocytes, that can attack "foreign" substances directly. In autoimmune diseases like lupus, these antibodies and t-cells start to attack normal tissues and destroy it.

Doctors don't know what causes autoimmune diseases, but they think some people may have a genetic predisposition which is then triggered by something - a virus, an environmental toxin, stress and many other factors can all be triggers. Many autoimmune diseases, including lupus, predominately affect women - so doctors think there may also be a hormonal link. The genetic predisposition in why many autoimmune diseases seem to run in families.

The ANA test is a screening test for auto-immune responses - ANA stands for antinuclear antibody, an antibody against the nucleus of the cell. If you remember your biology classes, the nucleus is the "headquarters" of the living cell, so ANA can damage or destroy cells & tissues. ANA is not a specific test to diagnose lupus because ANA can be found in the blood of people with other autoimmune disorders, and even in some healthy people, especially ones who have relatives with autoimmune diseases. Some drugs can also cause a positive ANA test, so can viral or bacterial infections. So if your test is positive (most doctors consider 1:80 or higher positive), your doctor will order additional tests to see if you have other antibodies - some antibodies are linked to specific autoimmune diseases.

ANA results are generally reported as a titer (number) and sometimes as a pattern. The titer shows how many times the technician had to mix fluid from the patient's blood to get a sample free of ANAs. So a titer of 1:640 shows a greater concentration of ANA than 1:320 or 1:160, since it took 640 dilutions of the plasma before ANA was no longer detected. The numbers can be confusing because the results go up arithmatically - 40, 80, 160, etc. Since each dilution involves doubling the amount of test fluid, the difference between titers of 1:160 & 1:320 is only a single dilution. And it doesn't necessarily represent a major difference in disease activity.

Since 95 to 98% of people with lupus will have a positive ANA, some doctors think that a negative ANA rules out lupus as a diagnosis. But a positive ANA test doesn't mean you definitely have lupus - your doctor will look at all your symptoms and lab results before making a diagnosis.

NP-lupus is when lupus affects the brain, spinal cord, and nerves in the arms and legs (the nervous system). CNS lupus specifically affects the central nervous sustem (brain and spinal cord) but causes similar symptoms. Since most of the symptoms of nervous system lupus are either neurological, like seizures, or psychiatric, like depression or psychosis, some doctors use NPSLE to refer to both NP and CNS lupus. NP lupus is sometimes misdiagnosed as a psychiatric illness or a different physical problem like MS, so you are very fortunate that your psychiatrist recognised the difference. Early diagnosis means early treatment, which can often keep the disease from progressing.

I know what is happening to you is incredibly scary right now, believe me, I understand - I've had lupus with CNS involvement for six years, including seizures. The good thing to remember is the treatment of NP lupus is much better today than it was even ten years ago. Medications like anticonvulsants to control seizures and antidepressants and antipsychotic meds can make an enormous difference in the quality of your life. Other treatments are aimed at turning off the hyperimmune response that causes the problems. Once your diagnosis has a diagnosis, you and he will work together to develop the treatment plan that is best for you. Believe me, this is not the end of your life as you know it. There will be adjustments and changes, it may be hard, but you can get through it. And there are always people here, 24/7, ready to listen and help. You are a part of our family now.

10-24-2006, 07:28 AM
I meant to say when your doctor has a diagnosis! Sorry for the typo.

10-24-2006, 10:13 AM
Thank you for all of that information. I've got two questions if it isn't a bother..

Are there other tests besides the ANA? Is my doctor being thourough about trying to diagnose this? (I ask because of how hard I had to push him to give me an EEG even after he was convinced I was having seizures - that's just his personality)

And then the other question is, do you get a malar rash, and is it like what I described in my post? I'm curious. Not that it matters, I guess, I really should just wait for the results instead of sitting here fretting.

10-24-2006, 11:00 AM
Psrt of the reason lupus is so hard to diagnose is there is no one specific test - lupus can look like a lot of other illnesses, and every lupus patient may have a different range of symptoms. Even things like fatigue and joint pain that affect most lupus patients are also common in other diseases. So your doctor has to look at your symptoms and your lab tests to put together a picture - sometimes this takes time, so you may nont get a diagnosis right away.

Most doctors in the U.S. rely on a group of 11 diagnostic ctiteria developed by the American College of Rheumatology (ACR). A person with 4 of these 11 criteria can be diagnosed with lupus; 3 symptoms suggest that lupus is probably present, and 2 raise the possibility of lupus. Symptoms may be present all at once or appear over a period of time. so it's important to let your doctor know about your complete medical history.

Butterfly (malar) rash on cheeks

Rash on face, arms, neck, torso (discoid rash)

Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)

Mouth or nasal ulcers, usually painless

Joint swelling, stiffness, pain involving two or more joints (arthritis)

Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis). This inflammation is called serositis.

Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts, in the urine

Nervous system problems, such as seizures or psychosis, without known cause

Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells

Positive antinuclear antibody (ANA) test

Signs of increased autoimmunity (antibodies against normal tissue), as shown by laboratory tests. This coulud include other positive antibody tests such as dna or ds-dna.

In your own case, a history of pericarditis, seizures, and malar rash could count as three of the four diagnostic criteria, so a positive ANA test could count as the fourth for a diagnosis of lupus. Even if the ANA test is negative, you can still be duagnosed with lupus if you have other criteria such as protein in the urine , although this is rare - probablyless than 5% of lupus patients are ANA negative.

Like everything else about lupus, the malar rash can vary from person to person, anc can look like acne or rosacea. It is also called a butterfly rash because of it shape - it usually affects both cheeks and runs across the bridge of the nose, but doesn't affect the folds of the nose. Exposure to sun or uv light often makes it worse. The rash can range from a slight red flush to a bright red rash like clown makeup - it it usually painless although it can feel hot and inflammed. It can last anywhere from minutes to months but usually goes away without leaving a scar. Since lupus can also cause low-grade fever and hot flashes which also cause flushing, it may be hard to tell if the redness is actually a malar rash. That's why it's important to find a doctor experienced in treating lupus.

Hope this helps explain a little better.

10-24-2006, 11:55 AM
What would the joint swelling feel like? I'm in pain a lot of the time but mostly ignore it, since I figure that everyone hurts here and there. I mean I can't open my jaw all the way half the time, and my hips hurt enough that the only thing that helps is steroid shots. Is that the right kind of joint pain?

Thank you for bearing with me and my questions.

10-24-2006, 12:29 PM
The joint swelling might be different depending on which joint is affected - I have the most trouble with my hands and knees - other people have problems with other joints - the problem with opening your jaw might be related to your temperomandibular joint, which is like the hinge that allows your jaw to open and close. The joint might be red or feel puffy and swollen, or just stiff and achy. Some people have pain with no visible swelling. Lupus can also cause inflammation of the tendons that connect your joints and muscles and this can cause very sharp burning pains. It can vary a lot from person to person. Sometimes you may just ache all over without it being any specific joint, more like the all-over yuck feeling you get with a bad case of flu. I feel worse in the morning and gradually feel less stiff and painful as the day wears on, other people wake up okay and start to hurt with activity. As this goes on, you will start to recognize your personal pattern and adjust your schedule around it.

One thing a lot of new patients don't realize is how much sun exposure can make you feel worse, so you have to be religious about sunscreen and UV exposure. Even indoor lights can make some people sick so you're safest to stick with incandescent light bulbs.

Do you get a warning or aura with your seizures? I usually know beforehand because I get a visual aura. I have to use a flicker guard on my computer monitor, and twinkly lights on the christmas tree are a definite no-no. My seizures are fairly well controlled with meds but I still have absence seizures sometimes - just a couple of blank moments I don't remember. Obviously you know to be careful about driving, but until your seizures are controlled, you should be careful about anything where you could get hurt if you have an unexpected seizure. A medic alert bracelet is also a good idea.

I hope as you get more information about this illness, it will seem less scary and more controllable. There are women on the forum who have been living with lupus for twenty years or more - it is possible to lead a happy and productive life as they all do. There are always changes and adjustments, but you find a balance and learn to cope. You're taking the first steps right now by educating yourself and asking questions - and it does get easier.

10-24-2006, 12:55 PM
I'm photosensative too. The worst for me is light trough trees in the car, and also patterns of lines or squares that take up a large part of my feild of vision. I keep demanding that after we move we get curtains instead of blinds :)

I don't drive. The state I'm in, when I came into the ER with a seizure they just revoked my liscence. If I go without a seizure for two years, they'll give it back, but that's unlikely because I have them more than once a day ussually. Also I'm honest with my doctor, so that makes it less likely. But I'd rather not drive than be a danger on the road.

After I almost suffocated with my head down on the bed, they've told me to sleep on my back or side, not to take a bath alone, never to swim, and avoid stairs and ladders and ledges and such when I can.

I do get aura, sometimes visual aura. I have temporal, occipital, and parietal lobe seizures, so sometimes I get weird physical sensations as auras too, like the sensation that there has been a tiny earthquake or weird shooting pains in my arm or something. I think I also get absences, but I can't really be sure. Maybe I'm just spacy.

I'm thinking of getting a medic alert bracelet.

Thanks for all your answers and help, Mary.

10-24-2006, 12:58 PM
Hi. I have been living with Lupus since I was 7 years old. I mean that is when the symptoms started for me. I had no idea what was wrong at the time and all the while I was growing up I was told that I just had growing pains by my mother. It was not her fault, she had no idea what was going on with me. My symptoms came on gradually and got worse over many years. In my 20's I tried to get medical tests run on me, because I was having serious joint pain, swelling and things like that, but I also had Dishydrotic Eczema. Every single time the doctors would see me they would get side tracted by the Eczema and that is all they would look at unfortunately. I did not get dx with SLE until I was 36 years old and had developed Myocarditis and a whole lot of other serious problems related to Lupus. I had most of the symptoms listed for Lupus to get a Lupus diagnosis. It is a shame that a lot of the general practitioners do not know that much about Lupus and they do not like to listen to the patient. I nearly died before they would listen to me and decide, oh yeah, a I think you need to be tested for Lupus. This is not right, but this does happen to some people. I am doing very well considering that I did not get treated until I nearly died. I manage to deal with this the best that I can. I have good days and bad days, but don't we all. You will learn in time what works best for you and what does not. I wish you the best and just let you know that you can learn to live with this illness. Hugs, Kathleen.

10-24-2006, 01:20 PM
Thanks for sharing your story, Kathleen. I admit to getting a bit angry at my doctors. This seems like it is taking a very long time, and in you it took even longer, and it also seems like with symptoms this severe something would be done sooner, that they would be more aggressive about figuring everything out.

10-24-2006, 01:38 PM
If your seizures are related to lupus, then treating the lupus may reduce the incidence a lot - it helps if your neurologist and your rheumatologist are willing to work together. I have a similar problem with light thru trees, also light reflecting on water. I've never had a problem with tv here but found out the hard way that TVs in other countries use a different screen that causes major problems for me. Has your doctor recommended photochromic glasses or polarized sunglasses to wear outdoors?

You also want to let your dentist know about your seizure disorder before you have anything done - another thing I learned through painful experience. Some antibiotics and anti-depressants can lower your seizure threshold, so it's a good idea to let your pharmacist know so they can warn you of any possible problems with a med. Many doctors are not well informed about the meds they prescribe, so a good pharmacist can be your best friend.

10-24-2006, 02:32 PM
Rather than special sunglasses, I just cover one eye. Closing it isn't good enough because the sun comes through the eyelid, but if you cover one eye with your hand it works pretty well to prevent seizures, because of the feild of vision thing.

Right now I'm only on a heart med to keep my heart beating right, I developed an arrythmia after paricarditis, and some anti-convulsants to try to keep my seizures down. The one or two a day is better than the six to ten I used to have.

If it is related to lupus at least I'll know what's going on with me. The whole thing is kind of frightening, but at least the answers are more helpful than "You're crazy" at this point.