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Anyone diagnosed with a positive ANA and a negative ENA panel?

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Posted 10/16/2013 4:42 AM (GMT 0)
Hi everyone. I recently had a positive ANA 1280 Homogeneous pattern.

In the past before I became pregnant with my now 1 year old I had trace amounts of blood and protein in my urine which was not due to an infection. I've also had low B12 and Folate. When I became pregnant this all cleared up on its on but I just learned of his high positive ANA. I'm thinking Lupus. I've read online the homogeneous pattern is very specific for lupus. I've had joint pain, especially when rain is moving in, fatigue and muscle aches (flu like). Also, the heat drains me so quick. Anyhow all my sub-tests for lupus; DsDNA, Anti smith/ Ro, etc. are all negative. I feel so frustrated because I want to know what exactly is going on and cant seem to get any answers based off my lab work other than a high positive ANA. Any input, advice, or personal experiences would be greatly appreciated. Thank you in advance.

Posted 10/16/2013 5:17 AM (GMT 0)
I was diagnosed with positive ANA, rash, fatigue, and joint pains. I've had more develop along the way though.
It depends on if your rheumy bases everything on just the blood test or considers the physical symptoms too. A good rheumy looks at both.

Have you looked at the indicators listed at lupus.org? You need to meet 4 of the 11 indicators to be diagnosed with lupus.

I take B12 and folic acid to help me. I also take biotin and B6.

Oh, by the way welcome to HW. tongue
Posted 10/22/2013 4:06 AM (GMT 0)
My blood work is similar to yours. ANA of 1:2560, normal subtests, mine is a speckle pattern, low white blood cells, high neutrophiles, ongoing joint pain with inflammation (this flare has been continuous since July), extreme fatigue, strange (atypical) rashes after sun exposure, chest pain, psychosis (with depression, hallucination and difficulty depicting reality from the pictures), on and on. My rheum first told me I had lupus, but then today when talking about my echo results, which were also abnormal showing diastolic dysfunction, inflammation and irritation of the heart, she says she is not sure what I have. She has ignored many of the symptoms I have told her about. Including the psychosis and is just focusing on the subtests being normal. I am very frustrated at this point because I clearly meet the criteria for lupus and she said I had it and now will not commit to the diagnosis. So I get where you are. Hope you get more answers soon!

Lainie
Posted 10/22/2013 4:00 PM (GMT 0)
AmyAmy -

Part of the reason you aren't getting results based on blood work is that Lupus (& other anti-inflammatory diseases) are NOT diagnosed by blood work alone. A positive ANA means you should check for the other symptoms of Lupus or other illness. *IF* you have 4 of the 11 possible symptoms used for diagnosis, then they may diagnose you. Some Drs work on blood only, which is old, outdated, and wrong. Some Drs even with 4 symptoms, are hesitant to commit to a dx until they see if you get better by being treated with lupus meds.

A diagnosis is not as important as your symptoms being treated!!

One way to find a good lupus Dr is to check www.lupus.org and locate your local chapter. Then contact the local chapter and find out which local Drs are on the advisory board -- these are the doc's interested in & informed about lupus!

Good luck!
Posted 10/22/2013 5:01 PM (GMT 0)
I totally agree with Lynnwood, doctors normally don't DX on blood work alone. Like Lynnwood said the important thing is to find a Rheumy that will treat your symptoms.

I've had lupus for 26 years now and it took my doctors 13 years before they Dx'd me and started treatment. I truly believe that the delay in treatment is the reason I'm so sick with my lupus. I'm in a constant flare and I've been treated with all but one drug to treat it. I've been on high dose prednisone for 13 years now.

I know it's very frustrating not having the DX, but keep seeing the doctors until they hear you and treat you. Lupus is very hard to DX, once you have the DX of lupus it will affect your ability to get certain life insurances.

I wish you well in your search for help from a Rheumy. I hope that you start to feel better soon.

Hugs,
Barbara
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