Lupus - please tell me all you know?

How hard was it to get diagnosed? What other possibilities did you have throughout diagnosis. I'm going with a face rash right now and alot of blood tests.

mliz55 - Thank you, I have printed out your answer because I'm not sure what alot of it means. I'll do some research on it. I'm going through the process of elimination like you mention. Apparently there is no test that says yes or no. We seem to be getting closer to yes. I wanted to mail you on this but you don't allow it. I totally understand that. I'm just really needing to get personal experiences. I have no medical insurarance so this has been a year long thing I'm going through. So many tests and so little money. It's something I try to ignore and block out alot until I have extra money for more tests. Thanks for your info. I think it will be very helpful.

Lupus is a chronic inflammatory disease of the immune system. attacks your own tissues and organs. Inflammation caused by Lupus can affect many different body systems, including your joints, skin, kidneys, blood cells, heart and lungs.

No two cases of lupus are exactly alike. Which is exactly why it can be difficult to diagnose. Signs and symptoms can come on suddently or develop slowly, may be mild or sever, and may be temporary or permanent. Most people with lupus experience episodes called "flares" of worsening signs and symptoms that eventually will improve or disappear.

The signs and symptoms of lupus that you experience will depend on which body systems are affected by it.

I have had lupus symptoms for almost 20 years. During that time my blood tests consistenly showed nothing. 18 months ago that changed and my blood tests started showing positive for Lupus. The average person sees between 4 and 6 doctors before they find one that will "listen" to them and treat them on their symptoms even if they don't have the blood tests to prove it. Just having a positive ANA will not get you a diagnosis of Lupus. A positive ANA with 4 of the 11 criteria set by the American College of Rheumatology would probably get you a diagnosis of Lupus. Your rheumatologist will order blood tests like ANA, Anti-dsDNA, Sm Antibody as well as a long list of other blood tests. If your ANA is negative you can still have lupus. If you have a positive dsDNA then more than likely you will get a diagnosis of lupus.

Many lupus patients go their whole lives and don't have the butterfly rash on their face.

The best advice I could give you is in two parts ... first, if you have swelling or a rash on your body take a good photo of it incase by the time you get into see your physician it's gone. I did this three weeks ago when I had a rash all over my body and the doctor was very glad that I did that. I just used my digital camera and brought the camera in for him to see. Secondly, don't give up. If your doctor tells you it's all in your head ... run, don't walk out of there and find another doctor. Keep looking for a doctor until you get one that will treat you on your symptoms not just the blood tests.

There is a good forum on the internet called Healing Well with a lupus forum. They are very friendly, can help when you just need a shoulder or an ear and they all have a wealth of information. http://www.healingwell.com/community/def...

Good luck with your blood tests and if you'd like help understanding them when you get them back post a message in Healing Well and the people there would be able to help you make sense of your tests.

Good luck!

go to WEBMD.com
will answer a lot of ur questions

As far as I know it`s a auto immune system dissorder.I have something similar, I have poly arteritis nodosa. It as to be controlled with drugs or it could be life threatening. Good luck you`lle be fine.

It is an auto immune disorder, that affects several systems in the body. it is diagnosed more by elimination.
"Positive antinuclear antibody: A more general marker in the blood for the presence of an autoimmune disease, these "ANA" levels increase with age, thereby somewhat increasing the rate of an incorrectly positive test as a person gets older. The ANA test is most useful when the result is negative, which essentially rules out the diagnosis of SLE, since up to 98% of people with lupus have a positive ANA test result." basically if you do not have a positive ANA test, you definitely do not have lupus, but if you do have a positive ANA test, that does not mean you have lupus. My niece went through all the tests, and did have a positive ANA, and it turns out that she does not have Lupus, just a weird familial tendency to a positive ANA.
If you do have Lupus, it is usually treated with steroids, and amelioration of symptoms. My stepmother does have Lupus, was diagnosed, 30 years ago, and is usually in good health, so hang in there.
other possibilities, Rheumatoid arthritis, mono or epstein barr virus, lyme disease, just a few possiblilites.

What I know is that the disease eventually will rot parts of the body. Like one day you can suddenly drop your finger and then your leg, like for real...

just only want you to make firiend.........

for more information on LUPUS, you can go to the Arthritis Foundation, Many of the the symptoms of lupus are similar to Rheumatoid arthritis, fybromyalgia and others.

I was diagnosed in the hospital after the amublance hauled me in! Now that I know the symptoms I can tell you that my lupus problems began in elementary school with my first huge flare in junior high. I was diagnosed at 51.

I have multiple system involvement-heart, lungs, kidneys, bone marrow. After 4 years on disability I have returned to work.

To tell you all I know would take a book. Lupus is unpredictable and affects each person differently. Unless I had more of a clue about what you are going through, I could not give a valuable answer. I could literally write 10,000 words or more, a bit much to expect on yahoo answers.

The Lupus Foundation of America does have support groups. This is an excellent place to talk with other lupus patients and get some of your questions answered. Find one through the link below.