Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone.
I was recently seen by a very well known medical center to evaluate my treatment plan for lupus and dermatomyositis, and now I'm completely confused.
Briefly, I had a negative/low titer ANA for many years and was told 'nothing' was wrong. After many frustrating visits with my rheumatologist, he finally agreed to run further testing. It came back showing a positive anti-Smith antibody, a positive Mi-2 antibody, and positive antiphospholipid antibodies. Finally, I had an answer to my years of suffering with SOMETHING not being right with me. I was diagnosed with systemic lupus and dermatomyositis.
After a year and a half of being on prednisone with very little, if any, improvement, my primary care sent me for a second opinion to a very highly regarded medical center. She was also concerned as multiple urine tests performed had gone from no protein to trace protein to 1+ protein during this time frame.
Well, the doctor listened to my symptoms and did a thorough examination. She then re-ran most, if not all, of the blood work I had had done.
I am shocked ... but she told me a week later that everything came back NEGATIVE. EVERYTHING.
How could this be? I had the antibody tests run by a very reputable lab. I had MULTIPLE urine specimens over the past year (at least 6 or 7) showing the protein. Even the antiphospholipid antibodies came back as high normal.
By any chance, could being on prednisone have ANY effect of these results??? I can believe one test maybe being different, but we are talking multiple tests from multiple laboratories that were positive ... are now negative.
Can anyone help me understand this?
I'm crying ... because I feel I'm back to square one again. "NOTHING IS WRONG WITH YOU." I honestly can't even get this 2nd opinion physician to return my call.
I was recently seen by a very well known medical center to evaluate my treatment plan for lupus and dermatomyositis, and now I'm completely confused.
Briefly, I had a negative/low titer ANA for many years and was told 'nothing' was wrong. After many frustrating visits with my rheumatologist, he finally agreed to run further testing. It came back showing a positive anti-Smith antibody, a positive Mi-2 antibody, and positive antiphospholipid antibodies. Finally, I had an answer to my years of suffering with SOMETHING not being right with me. I was diagnosed with systemic lupus and dermatomyositis.
After a year and a half of being on prednisone with very little, if any, improvement, my primary care sent me for a second opinion to a very highly regarded medical center. She was also concerned as multiple urine tests performed had gone from no protein to trace protein to 1+ protein during this time frame.
Well, the doctor listened to my symptoms and did a thorough examination. She then re-ran most, if not all, of the blood work I had had done.
I am shocked ... but she told me a week later that everything came back NEGATIVE. EVERYTHING.
How could this be? I had the antibody tests run by a very reputable lab. I had MULTIPLE urine specimens over the past year (at least 6 or 7) showing the protein. Even the antiphospholipid antibodies came back as high normal.
By any chance, could being on prednisone have ANY effect of these results??? I can believe one test maybe being different, but we are talking multiple tests from multiple laboratories that were positive ... are now negative.
Can anyone help me understand this?
I'm crying ... because I feel I'm back to square one again. "NOTHING IS WRONG WITH YOU." I honestly can't even get this 2nd opinion physician to return my call.
http://www.lupus.org/answers/entry/joint-muscle-pain-in-lupus
http://www.webmd.com/a-to-z-guides/myositis-symptoms-treatments-prognosis
I'm no doctor, but because lupus can "travel" around in the body, your test results may have also changed because the lupus is someplace else right now. Just my uneducated theory. That's what the lupus does to me. Today it can be affecting my eyes, ears, and brains; but next week the lupus might affect my kidney and bladder. Autoimmune diseases can be elusive to doctors, so I try to be proactive myself by eating healthily and doing online research. Even though I can't totally regain my former robust health, at least I'm maintaining a measure of health. I hope you find what works for you. Best wishes, and don't give up.
It is bad enough when you are told that the Lupus test is possitive,, but then to have them say you are fine later, is kind of a cop out on there part. The ANA is very subjective, it can vary from test to test, but it doesn't mean that you no longer have Lupus. When the doctor told me that I had three positives on the test, I told her, but it is subjective, she agreed, they have gotten better, but doctors still do not have a clue!
Like Nanny said, be proactive, clean up th diet, start eating better, do things that are in your power to change. Finda doctor that returns your calls, and get retested in a couple of months.
Good luck!