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View Full Version : New to the board but not to Lupus, apparently



teresaa40
10-29-2006, 10:40 AM
I am just figuring out that I must have Lupus. It has been suggested before by at least one doctor, but, never confirmed. I have all the symptoms except the photosensitivity. I haven't had any tests done, and don't know how long the actual process takes, but, will be getting started this week.

I have just had it with being so tired, having so many aches and pains, stiff sore joints, and everything else, and being told there is nothing wrong with me. I really believed I was a hypochondriac or something. For me, it started when I was beginning my childbearing years, about 1977. I had a premature baby, and no one could figure out why. After that, I was just exhausted all the time, easily prone to infections, and then had three more premature babies, none of which were explained to any doctors satisfaction. About the third baby I developed what I thought was Herpes. Then the joint pain became obviously not just normal aches and pains.

I divorced, and during that extremely stressful year, I ended up with a raging infection, that no doctor could figure out, and was bed ridden for weeks, I thought I was going to die. Every antibiotic failed, til finally a battery of them slowly got me back on my feet, but, I haven't been close to normal since then.

Weeks later I developed a butterfly rash across my face, several other rashes of varying sizes and degrees of severity on other parts of my body. The joint pain became extreme and widespread, and I also ended up with several different serious infections in my sinuses, ears, and eyes over the course of the next months. My doctor said I had some kind of immune system breakdown and that my systems were out of control but he didn't know why, his plan was to keep treating the rashes and infections and adopt a wait and see what happens attitude. When the rashes started to subside, except for the one I still have on my lower back scalp, and the infections were under control, he decided I must be getting better, put me on Feldene for the arthritis I was barely dealing with, and that was pretty much that.

I remarried, and continued to have problems carrying babies to term. On my third child in that marriage, I developed a heart murmur, which was diagnosed as a mitral valve prolapes with regurgitation. My heart was throwing pvc's right and left, sometimes to the point of making me think I was having a heart attack and always ending in a migraine headache.

I still have redness on my face where the rash had been, and my eyesight has deteriorated. I have continuous problems with sore red eyes, mostly in the corners where the tear ducts are. I always wake up with crusty eyes, and rubbing makes the pain worse. Soreness also comes on during the day without warning or explanation. I have had chest pain that doctors assumed was pluerisy, but never satisfactorily diagnosed. They just decide that must be what it is, give me an antibiotic, and when I feel better we all chalk it up to that.

Often I have my throat dry out causing a gagging, choking sensation. I have to force myself to make saliva before it will ease. I have constantly swollen lymphnodes, that several times have swollen to the point of being visible and raised. Antibiotics reduce the size of the inflammation, but, they are always swollen and sore.

I wake up every morning feeling like I am 100 years old, and like I didn't get any sleep at all. My joints are so stiff I can barely move, and if I sit too long I walk with a limp. I have blood clots that form in both deep and superficial veins. I also have Reynauds syndrome.

I would go on but this post is already longer than I wanted it to be. I am just trying to get started in learning what I am really dealing with and what to expect from the progression, as I seem to be getting worse rather quickly now, and have recently had an unexplained kidney infection and my heart is acting up more than it used to.

I also have developed bowel problems, so, I am thinking I had better get ready for what might be next.

It's scary, and overwhelming to think I have had an actual disease for probably 25 years or more, and have ignored it for so long because my doctors didn't put two and two together and neither did I.

Teri A

KayCee31614
10-29-2006, 11:20 AM
Hi Teri,
I just read your post and it sounds like you are going through a lot of the same things that I went through for years before I got dx with SLE. I think you need to see a doctor and get tested for SLE, Lupus. It seems like you are going through a lot of what I went through for years in that the doctors are not testing you for Lupus. I had a terrible time getting them to listen to me and had to get down right mean. I hope that they will listen to you. You need to make a list of all of your symptoms and problems with your pregnancies. You can show them a list of all of the symptoms and they should test you for Lupus and Thyroid problems. I wish you the best. Hugs, Kathleen

MARYCAIN
10-29-2006, 11:47 AM
Sadly, many women suffer as you have, because auto-immune diseases, like lupus, are among the most difficult to recognize and diagnose.

In case you aren't familiar with the term, auto-immune disorder refers to a group of more than 80 diseases and conditions where the body's own immune system turns against itself. 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 bacteria. 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.

One of the ways doctors can test for auto-immune disorders is to look for certain antibodies in your blood. You will see many references to an ANA test, sometimes also called a FANA test. 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 ANAs 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, such as Sjogrens syndrome, scleroderma and other diseases.

In your instance, you must definitely talk to your doctor about testing not only for lupus, but a condition called Antiphospholipid Antibody Syndrome, which can cause recurring miscarriages, and is also linked to blood clots, migraines. and increased risk of stroke. You also need to be tested for Sjogren's syndrome, an auto-immune disorder that can cause dry mouth and eyes as well as other systemic problems.

One of the problems with auto-immune disease is that patients often develop more than one autoimmune problem, either at once or serially, Estimates are at least 10% of patients with lupus also have some other autoimmune disease - this is true in general for all patients with autoimmune illness - so it's possible for a lupus patient to also have sjogrens or an RA patient to have polymyositis - this is called "overlap" syndrome. It can be complicated to sort out which symptoms go with which disease, and what treatment is most appropriate. So you need to see a doctor who is well-informed about autoimmune illness, and willing to do the testing and observation necessary.

There is no way to really tell you how long it may take to get a diagnosis - a lot depends on your lab tests and clinical symptoms. It is also impossible for anyone, including your doctor, to predict the course of your disease - by their very nature, these diseases are unpredictable and every patient's experience will be different. The important thing is not to let your doctor dismiss your symptoms as unimportant or unrelated - be assertive about your health care. Remember that you do not work for the doctor - he works for you.

teresaa40
10-29-2006, 12:14 PM
Thank you so much for the replies. I plan to see my doctor as soon as I can get an appointment. It is so frustrating that all this time I thought all these things were unrelated, and that I must be imagining things because who in the world can have that many things wrong with them, and how can something that happened so long ago be related to things happening now.

Im in the middle of a flare right now, feeling awful, and just mad that it might not be so bad if I was being treated, or at least I would know what it is and be better able to accept it.

I have created a timeline of sorts, with all the changes and symptoms and everything that I can remember from my medical history, and I will be giving that to my doctor so I'm not forgetting to tell him anything.

How crazy of a world we live in that all this time no doctor has put the pieces together, including the elevated SED rate, but, I type this into a search engine and there it is. It was like a light went on.

KayCee31614
10-29-2006, 12:27 PM
Hi Teri,
Marycain is very knowlegeable and thank heavens for her. I know in my case the illness was insiduous. I mean over many many years. This seems to be common with most of the Autoimmune Diseases. You can't really be angry at anyone. It just seems to happen that way some times. I am just so thankful that they finally found out what was going on with me when they did and got a good handle on it. I hope and pray that they figure out what is happening with you and are able to help you out. You will have to post and let us all know what the doctors do and say ok. Hugs, Kathleen :)

MARYCAIN
10-29-2006, 01:05 PM
I would suggest that you also go to the American Autoimmune Related Diseases Association -
www.aarda.org - for more information about auto-immunity and the way it affects women. You might also want to look at the Sjogrens Syndrome foundation website - www.sjogrens.org - for some helpful information about how to manage dry mouth and dry eye symptoms.

The chronic dry mouth from sjogrens can cause severe dental problems, so this is an issue you also need to bring up with your dentist asap. There are treatments that can help. Using a good moisturizing toothpaste, and staying away from alcohol-based mouthwashes that dry the mouth will also help. You can find products like Biotene and Rembrandts in most drug stores, or your doctor may recommend a prescription anti-bacterial rinse to use. Sucking sugarfree candies or ice chips and drinking lots of water will also help. This may sound strange, but something sour like sour candy or a pickle can also help because it triggers saliva production.

As far as dry eyes, you need to avoid eye drops designed to get redness out - a lot of these products will dry your eyes out more. Until you can talk to your doctor, you can find artificial tears products over the counter. You may also need to avoid eye makeup and mascara for a while, as these can also irritate your eyes. Nasal decongestants and sinus medicines can also have a drying effect so they can be problematic for people with dry eyes or mouth.

I hope you are able to find some answers soon - I know this is a long and frustrating journey, but you don't have to walk it alone.