Newbie Here Needing To Talk
Hi , my name is Sherri and I am 33 years old. I have been dealing with a wide variety of symptoms for several years, and have finaly been told that I may have SLE, in fact my doctor , a liver specialist is the the one who thinks this is what is going on. He sent me to a rheumatologist who said I have a clinical presentation but I am ANA negative?? anyway The liver doctor started me on prednisone taper off dose to see how I would respond and I felt great the first day I took it better than I have in months, as the dose got smaller the symptoms came back and now that I am off.. I'm back to my old miserable self again. Does anyone have a dx with being ANA negative? I'm just frustrated and want an answer. This is very agitating, i'm beginning to think I am crazy! Please someone tell me Im not.
With reference to your question about negative ANA and lupus diagnosis, please read my post in "Systemic Lupus Erythematosus Symptoms" dated April 28, 2006. I posted an article written by a doctor which addresses this issue.
Next, let me say that you are not alone in your frustration and feeling as if you are losing your mind. We have all, at one time or another, been there and felt that. No, you are not crazy...the symptoms of lupus are as varied as the individuals who suffer from the disease. Lupus affects each one of us differently and our symptoms are never the same. Lupus has been called "The great imitator" because its symptoms mimick so many other diseases and doctors are generally baffled by the numerous symptoms or they try to tell us that it is "all in our heads"
Further, diagnosing Lupus is extremely difficult and may take months before you get a definate answer. It can cause extreme anguish just waiting to find out what is really wrong with you. Then, we become relieved when we finally get a diagnosis, but depressed about having the disease. So, as you can see, the whole prospect can be daunting and can weigh heavily on your emotions.
Just know that you are not alone..we all have gone through what you are going through and we are here to help you understand the process.
I wish you the very best..please keep us informed as to how you are doing and what your test results reveal!!
Peace and Blessings
Just know that most people here have gone on the dx roller-coaster ride. It can take (and many times does) years to get a diagnosis and then get your meds right-just in time to change them again. You are in my prayers that you will get some answers soon-in the mean time, please take care of yourself.
Also, I found that putting a symptom number (1 for none and 10 for I think I am going to die) on my calender and bringing that to my doctor helps. It shows him that even if I am okay today-I have had many more down days. An overall picture can also help you see the pattern of things that can bring on bad days.
I have had positive ANAs and negative ANAs over the years and have been diagnosed with Lupus for over 20 years now. It comes and goes and sometimes I think the labs don't always do the greatest jobs. I know here in Fla the blood sits out in the hot sun for hours sometimes and I wonder if that affects the outcomes. I had a very high titer the past 2 blood tests for ANA and last year they all came back negative. Although it is a tool for Lupus diagnosis, I don't think it is conclusive. I wish doctors would learn to treat the patient and the symptoms and not to treat the labs! We all have had such frustration with doctors and lab results and no one understanding. I am new here, but it somehow is comforting to see others going through the same things. :roll: