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Undiagnosed - Advice Please?

Hi All

Iíve lurked around these boards for a few weeks while awaiting the return of my blood results which have taken four weeks. I think those have thus far, been the longest four weeks of my life.

To start my story Iíve always been a bit sickly, always suffering from one thing or another to the point that earlier this year I was giving a warning at work for having been off a total of 19 days in the previous twelve months. I was devastated, I cannot help being sick and I am not one to take a Ďsickyí unless I truly am sick.

But this year I started to have some pain in my hips and in the front of my pelvis. I didnít have it every day but I ended up in A&E one night, unable to lift my left leg off the floor without almost passing out from pain. They scanned me for a suspected ruptured ovarian cyst but found nothing (I have Polycystic Ovarian Syndrome too so this seemed the obvious reason to everyone). I was scanned again a week later when the pain stared to come back but still no cysts or remains of one.

Around the same time I was sent for a sleep check as I keep falling asleep during the day. I canít help it, its like a wave comes over me and I just have to lie down and go to sleep. As a single mother of two children under the age of 5 this isnít ideal!!!

And two years ago, after a day at the beach, I woke up the next morning with a face like a pepperoni pizza. The most horrific rash Iíve ever seen covered both my cheeks, a little way down onto my neck and across my forehead. I was diagnosed with Acne Rosacea and that was that until this year when I was sent to see a dermatologist to make sure that I was receiving the right treatment for my skin.

It was the dermatologist who decided to run some tests and first mentioned Lupus. Iíll admit its something I had never actually heard about before.

So today, after four horrible weeks of waiting, my GP calls to say that a letter has come back from the Dermatologist. Apparently some of my blood work was negative and some was positive. I tested Negative for ANA and Positive for ENA. She mentioned something about Mixed Connective Tissue Disease (one of which could be SLE) and something about another blood test being positive too.. SN.. And another few initials but that point Iíd lost my concentration Iím sad to say. She said that the dermatologist thinks that they need to keep a close eye on me and she wants me to go for a few more blood tests, the main one being Rheumatoid Factor?? Or something close to that anyway ~lol~ So thatís going to be tomorrows fun, I hate needles!

So the part I canít work out is, with a Negative ANA and Positive ENA, could this still turn out to be Lupus? Anyone got a better clue than me?

Hello and welcome to our family :lol:
There are many people who have what is called "Negative ANA Lupus". 95-98% of people with lupus do have a positive test for ANA. But, around 5% of people can have a negative ANA test, and still have lupus. Therefore, if you have some of the symptoms and signs of lupus, but with a negative ANA test, your doctor will try to eliminate a large number of conditions that can have a positive ANA test before they diagnose you with Lupus (thus the request for additional tests). These other conditions, which can mimic lupus and have a positive ANA test, include mixed connective tissue disease, undifferentiated connective tissue disease, scleroderma, myositis, rheumatoid arthritis and several others. Some times, it may take a while before a clear diagnosis can be made, because these diseases, like lupus, can sometimes evolve slowly, symptoms come and go and symptoms change. So, the diagnostic process may take some time.

Lupus patients who have a negative ANA test usually have a positive test for anti-Ro (also called anti-SSA) or anti-La (anti-SSB). The ANA screen can not be relied upon for its negative predictive value. A negative ANA may not exclude you from having these other autoimmune conditions.

ENA testing (antibodies to "extractable nuclear antigens") assists in defining subsets of autoimmune diseases, with the most important antigens and their clinical associations listed below. Doctors perform the ENA screening using an enzyme-linked immuno-sorbent assay ( ELISA) and also uses the counter-immunoelectrophoresis ( CIE) assay as a confirmatory test. The ELISA results have enhanced sensitivity, especially for SSA, SSB and Scl-70 antibodies.

The anti-Sm antibody - Antibody to the Smith antigen is a protein that helps DNA stay in its correct shape as it goes about its business directing the cell how to do its work. Together, anti-Sm, anti-RNP, anti-Ro/SSA, and anti-La/SSB are known as ENA antigens. A positive test, like anti-DNA, generally means that lupus is present. False positive tests are very rare.
However, a negative test does not mean that lupus is not present, since other tests can still be positive. Most persons with lupus have either anti-DNA or anti-Sm antibodies.

Hi from Manchester Numpty - isn't Saysusie just the fountain of all knowledge? It's incredible how she can answer all our questions in the blink of an eye isn't it? Hope you get a good result from all your tests. Keep us posted.

Hi Numpty,
Welcome to the forum. I hope that they can figure out exactly what is going on and give you clear answers. Sometimes it take quite a long time to get a clear diagnosis. Please keep posting.

Hugs,
Kathy

Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.