Terrified

Hi all,

I have been having health issues for a couple of years now and was recently diagnosed with chronic fatigue syndrome. Last week I began having eye pain, and in the course of trying to find out what was wrong a cotton-wool spot was detected on my eye.  Apparently there are only a few things this could indicate--and the most likely one for me is lupus.  I also had pleurisy this summer, and feel like I have never really recovered--I still get short of breath very easily.  My diagnosis of CFS came because of severe fatigue, intermittent fevers, and widespread pain (esp under my rib cage).  The only thing that makes me feel better is when I go on prednisone to treat another medical issue. Not only does my energy improve, but my pain is GONE! The doctors response to this is "everyone feels better on steroids".

I have now been told all of this can happen with lupus.

6 years ago I was having severe joint pain, and I went through a bunch of blood work/tests which showed a negative ANA. They ended up finding out that I was severely vit. D deficient due to being extremely sick when I was pregnant for my daughter (I had hyperemesis all 9 months).  If my ANA test was negative then, would it be positive now? Can you have lupus with a negative ANA?

I will be seeing my GP soon, but I am wondering what I should be looking for? What blood tests are usually ordered? Is there a definitive test? Any info/advice is appreciated!

Jamie

Hi Jamie:

Welcome to the lupus forum and I'm sorry to hear that you may have lupus. I'm not Doctor and can't say whether you have it or not. You do have some symptoms of lupus but you may not have it. Lupus is very hard to diagnosis is know as the disease of 1,000 faces. There isn't one specific blood test to prove you have it.

Joy showed you where to look at the 11 symptoms that the Rheumatologist uses to help them diagnosis us. You must have 4 of the 11 to get a diagnosis. Lupus varies from patient to patient, some cases are very mild to some very severe cases. Yes, you can have lupus w/o having a positive ANA, according to the Lupus Foundation, I believe they say only 10% of patients will test negative. I happen to be one of that 10%, I have had a positive ANA several time over the 26 years that I've had the disease. Normally, however, I test negative on my ANA and double stranded DNA.

Your GP isn't the person to diagnosis you, you need for him to give you a referral to see a Rheumy. Also, the Doctor's comment about prednisone makes feel better is pretty much true except for folks with Fibro. My hubby who doesn't have lupus was on prednisone for a severe allergic reaction to poison ivy, and his low back pain went away totally while on the prednisone.

If you have any questions, please free to ask away here. Lots of experience folks here with the disease. As you read about lupus, please remember, lupus isn't a death sentence at all. Most patients respond well to treatment. There isn't a cure for lupus but many patients go into a symptom free period, guess you could call it a remission. Good luck and I hope that you get some answers really soon. I'm very sorry about the pleurisy I suffer from the stuff all the time and uveitis a lot.

Try not to panic to much yet, wait and see what the Rheumy has to say. Remember, keep the journal of symptoms and try to stay out of the sun. Also, rest is a key thing in helping your lupus. Plenty of rest and low stress are very helpful to make you feel better.

Hugs,
Barbara