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    First of all, if this is in the wrong section, I apologize, I wasn't sure where to post this.
    I am a new member here, and I have a few questions.
    For about three months I have had an onset of symptoms all beginning at around the same time. I have inflammed urethra(urethritis), inflammed bladder, and TMJ, which are all definite diagnoses, although no one could really give me an answer as to what caused them. Also, protein is present in my urine, along with WBCs. I have possible anemia(have the symptoms, also am a vegetarian), but I never really saw my blood test results. It also seems as if I have been bruising more easily. Other symptoms I have had are IBS symptoms(unofficially diagnosed, a doctor once mentioned it was possible), shortness of breath and inability at times to get a deep breath(this is on and off), and this sharp piercing pain near my heart that is on and off, and I am seeing a cardiologist soon to find out what is going on with the sharp pain and shortness of breath(maybe pericarditis?). Also, three months ago, I had an awful ear infection(probably worst I ever had), it was inflammed, but I guess the antibiotics cleared it up. I also had an awful, terrible sore throat, I went to the doctor and he saw inflammation in my throat, I got antibiotics and a numbing mouthwash, I took one antibiotic pill and some of the numbing solution for my throat, and two hours later the pain was nearly gone, and by the morning, all the pain was gone and I didn't get it again, it mysteiously went away, i didn't need antibiotics. All of this inflammation began about three months ago, and I just can't help but think of what a huge coincidence for me to have a lot of this inflammation with no doctor really knowing the cause to any of it. For what it's worth, I had symptoms of urethritis and cystitis about five years ago, got the runaround with doctors, no one gave me a definite diagnosis(no one did a cystoscopy either), and after about 1-2 months, it just went away. While that was lessening up for an unknown reason, I developed a bad sore throat that lasted about a month. Also five years ago was the onset of IBS symptoms. And now, five years later, it's like déjà vu, except this time I have confirmed diagnosises.
    At my recent urologist appt., when asked what caused this inflammation, he said he didn't know, a rheumatologist was brought up, and he said well let's see what the antibiotics do(levaquin, been on it for three weeks, haven't noticed improvement.) My mother is thinking an autoimmune problem, with all inflammation. I did a lot of reading on lupus over the past couple days, and it sounds possible with all this inflammation. I don't have any of the skin conditions with lupus, though(butterfly rash, etc), and I don't have joint pain(unless TMJ counts.)
    Does any of this sound like possible lupus? What are your thoughts on this? I am seeing a cardiologist very soon, and possibliy a rheumatolgist, and of course, they are the only ones that can tell me what exactly is going on. I just really like to have an idea of what could be going on and what I can bring up at the doctor, considering my experience with a lot of doctors hasn't been successful. I hope I don't sound like some hypochondriac with all this going on(I swear I'm not) and I am not self-diagnosing myself by no means, just getting ideas. It worries me more not knowing what could be going on and possiblites as opposed to not having a clue.
    Just wanted to add, I am 17.
    Also, I have read a lot on autoimmune diseases, and the only one that really talks about inflammation is lupus, which is why I am thinking that as possiblity.
    Thanks for reading.
    Btw, Bless you all for going through so much, I have browsed around on this forum, and it sounds like all of you have had a lot going on health wise, I hope you all feel better.

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    Also, I wanted to add that along with all of these symptoms that began three months ago, also starting around that time, my menstrual cycle has been out of whack, and it was never like that, it was always predictable, but now it's a guessing game.
    Thanks for any thoughts.

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    You are right about the fact that one of the primary things that Lupus does is cause inflammation in various parts of our bodies and our internal organs. Lupus can cause inflammation in the sac surrounding the heart (pericaridtis), inflammation in the sac surrounding the lungs (pulmonary hypertension), inflammation in the joints (arthritis), etc. Also, Lupus makes us vulnerable to infections. Lupus can also cause problems with the kidneys which reveal themselves as protein leaks in the urine. Not everyone with Lupus will develop the skin lesions and there is a form of Lupus (Discoid Lupus) which primarily affects the skin. People with Lupus also suffer from "Lupus Headaches" and most of us suffer from some form of anemia.
    Additionally, many of us with Lupus have also developed Fibromyalgia. Now, the symptoms of Fibromyalgia incude TMJ, IBS, sleep disturbances, headaches, fatigue, muscle aches.
    In short, it is quite possible that you are suffering from some sort of auto-immune disorder and/or connective tissue disease. However, your doctors will have to run the appropriate tests and do lab work, take into consideration your symptoms and your history, follow the development of your symptoms and determine if you fit the criteria for Lupus or another auto-immune disorder. This process could take months to a year before you get a definite diagnosis.
    In the meantime, we are here to help you and to answer your questions and provide support. Let us know how your appointment with the rheumatologist goes.
    Peace and Blessings
    Saysusie
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    Thank you very much for the information, Saysussie!! It helps a lot!

    I am not sure if this is related to what is going on now or different but all day yesterday I felt sick, like I had the flu, that flu feeling you get. My mom, who works in a healthcare enviroment, said the flu isn't going around. But today I feel better than yesterday. Then starting last night to today, I have had these pains in various places, and I don't know if these are joints or not, but it's been in that area where your thumb meets your wrist, the sides of me knees, my ankles, my knuckles, and my elbow, and the pain comes and goes. Also, that sharp pain in my heart area seems to be more often. I've never really had this before, but maybe it's part of me feeling sick yesterday? Is this something I should bring up when I go to the doctor, is it important? I just feel worried that if I bombard them with all this pain and symptoms that I am feeling, I am worried they are going to think it's all in my head, although I know it's not, I feel it. I've been to so many doctors for urologic pain, and almost all of them said it was in my head, until one doctor did a cystoscopy to see my bladder and urethra was inflamed, so they were wrong. What do you think this pain in all these places could be, could it have been part of that flu feeling, or is it joint pain(if those areas are even joints.) Should I get a sooner appointment, will it get worse?

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    Yes, you should definitely mention these symptoms to your doctor. Many people describe their Lupus as feeling like they are suffering from the worst flu they've ever had in their lives and never getting over it! The flu-like symptoms (just not feeling good) along with the aches and pains, burning muscles, arthritis like inflammation in our joints etc. can all be symptoms of active Lupus.
    I would suggest that you keep note of all of your symptoms, when you notice them, exactly how they feel, what you were doing when you noticed them etc. These are all important things that your doctor should know when attempting to diagnose you. Don't ever feel like you are being over-dramatic or a hypochondriac. Lupus is a SYSTEMIC disease. Systemic diseases are diseases that involve many organs, tissues and/or the whole body. So, in essence, if you have Lupus and the disease is active, then you can have many parts of your body involved in symptoms at the same time; your heart, your lungs, your kidneys, your joints, and your muscles could all be symptomatic in tandem. So, it is not in your head!

    I wish you the very best
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    Saysusie
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    Hi Saysuzie,

    I wanted to ask you, what is a lupus headache?

    I suffer from migraines. Classical migraine headaches. Dont' take anything for them though as I only get them really bad once a month or so. I get the whole visual aura and stuff with them.

    I also get these headaches that come and go and have for years and no doctor has ever been able to tell me what the heck they are. They come and stay for long periods of time. I get this pain in the top of my head that actually feels electric in nature if that makes any sense, like a zapping pain. It sure hurts.

    Anyone familiar with this type of headache pain?

    Thanks

    Lisa

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    Quote Originally Posted by Saysusie
    Yes, you should definitely mention these symptoms to your doctor. Many people describe their Lupus as feeling like they are suffering from the worst flu they've ever had in their lives and never getting over it! The flu-like symptoms (just not feeling good) along with the aches and pains, burning muscles, arthritis like inflammation in our joints etc. can all be symptoms of active Lupus.
    I would suggest that you keep note of all of your symptoms, when you notice them, exactly how they feel, what you were doing when you noticed them etc. These are all important things that your doctor should know when attempting to diagnose you. Don't ever feel like you are being over-dramatic or a hypochondriac. Lupus is a SYSTEMIC disease. Systemic diseases are diseases that involve many organs, tissues and/or the whole body. So, in essence, if you have Lupus and the disease is active, then you can have many parts of your body involved in symptoms at the same time; your heart, your lungs, your kidneys, your joints, and your muscles could all be symptomatic in tandem. So, it is not in your head!

    I wish you the very best
    Peace and Blessings
    Saysusie
    Thank you so so much, Saysusie, you have been a lot of help!!
    I made an appt. with my internal medicine doctor for wednesday, because I feel terrible. And if it is something to be concerned about, I rather know about it sooner than later so that it can be controlled/treated. Do you know what tests she could use to test me for possibilites of an autoimmune problem? Any tests to see what's up with this heart pain/shortness of breath? My doctor listens to suggestions and takes them into consideration, so I always like going to her with ideas. Thank you!!

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    Quote Originally Posted by misslisa1017
    Hi Saysuzie,

    I wanted to ask you, what is a lupus headache?

    I suffer from migraines. Classical migraine headaches. Dont' take anything for them though as I only get them really bad once a month or so. I get the whole visual aura and stuff with them.

    I also get these headaches that come and go and have for years and no doctor has ever been able to tell me what the heck they are. They come and stay for long periods of time. I get this pain in the top of my head that actually feels electric in nature if that makes any sense, like a zapping pain. It sure hurts.

    Anyone familiar with this type of headache pain?

    Thanks

    Lisa
    I wonder what that feels like, too. Since this joint pain and flu feeling came on, I have had this awful headache on and off, and I NEVER get headaches, I can't even remember the last time I had a headache. I am not familiar with a zapping pain. The only way I can compare it is to the headache you experience from general anesthesia.

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    Misslisa;
    The primary difference between a Lupus Headache and other headaches is that most of us who have Lupus Headaches also have antiphospholipid antibodies (APS). These are not found in persons who suffer from regular migraines. Pateints who tested positive for antiphospholipid antibodies had lupus headaches more frequently than those without a positive ANA. Also, patients with elevated levels of antiphospholipid antibodies together with lupus headaches experienced more neuropsychiatric signs of lupus, such as:
    - strokes
    - visual disturbances
    - problems with thinking or memory.
    Also, people with Raynaud's and Sjorgen's along with their Lupus also suffer more with Lupus Headaches.
    Lupus headaches by themselves do not appear to be a risk factor for developing neuropsychiatric signs of lupus. However, Lupus headaches are known to occur together with other complications of lupus that can lead to permanent damage.
    Now, people with lupus can experience headaches which are unrelated to their lupus, (like sinus headache, tension headache and bone spurs from osteoarthritis). However, approximately 20 percent of patients with SLE experience severe headaches which are, indeed, related to the disease and is known as lupus headaches.
    The lupus headache is very similar to a migraine headache and, as mentioned above, may be seen more often in people who also have Raynaud's phenomenon and Sjgoren's. SPECT scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict. Lupus headache is treated with the same medications as tension headaches or migraines, although corticosteroids have also helped with Lupus Headaches.

    Gisele;
    In "Newly Diagnosed", there is a post that talks about the tests and criteria necessary for making a diagnosis of Lupus.
    If the pain in your chest is due to pericarditis, your doctor may do some or all of the following:
    Your doctor will also listen through a stethoscope for scratchy sounds called a pericardial rub, which are produced by heart muscle rubbing against the inflamed pericardium. Blood tests will look for increased numbers of white blood cells and other substances that would suggest the presence of infection and inflammation in the body. Your doctor may recommend that you have an electrocardiogram (ECG), a test that monitors the electrical activity of the heart. Characteristic changes of electrical activity occur with pericarditis, and an ECG will detect these changes. The ECG can also help to rule out pericarditis by suggesting other causes of chest pain, such a pulmonary hypertension. Your doctor may use an echocardiogram for a detailed view of your heart. An echocardiogram is a painless scan that uses sound waves to image structures in and around the heart. An echocardiogram easily detects accumulated fluid in the pericardial sac, which typically accompanies pericarditis. During this test, a microphone-like device sends sound waves through the chest wall to the heart. The sound waves are then reflected back to the device, where they are transformed into images of the heart and surrounding tissues. Echocardiograms allow physicians to estimate the amount of accumulated fluid and determine whether the fluid is compressing the chambers of the heart.
    Other tests that may help your doctor diagnose pericarditis include a CT scan, an MRI scan, a chest x-ray, pericardiocentesis, and pericardial biopsy.

    If your chest pain is due to problems with your lungs, such as pulmonary hypertension (Pulmonary hypertension begins when tiny arteries in your lungs become narrow or blocked. This causes increased resistance to the flow of blood in the lungs, which in turn raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing the heart muscle to weaken and sometimes to fail completely), your doctor may do some or all of the following:
    You doctor may do a chest X-ray or electrocardiogram (ECG) — a noninvasive test that measures electrical impulses traveling through your heart. An Echocardiography (ultrasonic cardiography) may be ordered. This noninvasive test uses harmless sound waves that allow your doctor to see your heart without making an incision. Sometimes your doctor will recommend an exercise echocardiogram to help determine how well your heart works under stress. In that case, you'll have an echocardiogram before exercising on a stationary bike or treadmill and another test immediately afterward.
    A Pulmonary function test is a noninvasive tests that measure how much air your lungs can hold and the airflow in and out of your lungs. They can also measure the amount of gases exchanged across the membrane between your lung wall and capillary membrane.
    A Perfusion lung scan is a test that uses small amounts of radioactive tracers (radioisotopes) to study blood flow (perfusion) in your lungs.
    Right heart catheterization test is performed on an outpatient basis using local anesthesia, this test is often the most reliable way of diagnosing pulmonary hypertension. During the procedure, a cardiologist places a thin, flexible tube (catheter) into a vein in your neck or groin. The catheter is then threaded into your right ventricle and pulmonary artery. Right heart catheterization allows your doctor to directly measure the pressure in the main pulmonary arteries and right ventricle.
    Fast computerized tomography (CT). A CT scan allows your doctor to see your organs in two-dimensional "slices." Split-second computer processing creates these images as a series of very thin X-ray beams pass through your body.
    Magnetic resonance imaging (MRI). This test uses no X-rays. Instead, a computer creates tissue "slices" from data generated by a powerful magnetic field and radio waves. Although not yet routinely used to diagnose pulmonary hypertension, it's showing great value in assessing the pulmonary arteries.
    I hope that I've answered your questions. Please let me know if either of you need any more information.

    Peace and Blessings
    Saysusie
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    Saysusie, thank you so so much, I am so grateful!! I wrote down all the information you shared with me and I am going to mention it all to my doctor tomorrow. Thank you and God Bless!!

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