I was wondering if anyone else is of the opinion that doctors don't test for Lupus early enough. I have been seriously ill for more than 3 years. I have had health issues for about 20 years, but only really bad the last 3. My PCP sent me from one specialist to another, and no one could find anything wrong. It wasn't until I told him SPECIFICALLY to test for Lupus that he ordered those tests. Only God knows how long I've had it. Why isn't it, given the potential damage to our organs, tested for more routinely?
Hello Jazmin. my two cents worth? The testing, if they do the complete autoimmune array, is VERY expensive. And, some of us don't have the expected test results, but do have the symptoms. I so understand your frustration with this, have bounced to every kind of doctor under the sun trying to find out how to feel more healthy, and keep quality of life. Often too, we can have symptoms of more than one disease or disorder going on, and not every doctor is a great diagnostician!
I feel too many of us are observed for years, until all other possibilities have been ruled out. In my book if it looks like a pear, smells like a pear, tastes like a pear, grows like a pear, it's a pear! So, many of us with lupus and other diseases and disorders struggle through without the benefit of treatment options. That's one reason I fell in love with this group - I can learn tips and tricks, have support, hear that I'm not alone, others have had the same struggles and more. Good for you for standing up for yourself, and educating yourself to help you move along and get help.
I know that I was ill for a very long time as well. Because I am ANA negative it took a stroke and a kidney biopsy to find the lupus. My Rheumy actually told me that had I not had the biopsy she would have had a hard time diagnosing lupus. I had a preemie (3 months) constant endometriosis, severe pneumonia (3 times), seizures, severe anemia etc. yet no one could find a reason. It took my nephrologist and the constant out of control BP that gave him the idea of lupus. First blood tests were neg because of the ANA yet I was spilling 130,000 times the amount of protein that I should have. Even he was a bit surprised by the results.
I guess the point is that none of us have a "typical" diagnosis. It took over 50 years for a new med to be introduced so I am hopeful that as more is learned about the disease, better and faster tests are on the horizon. Doesn't do much for us today, and I do understand the frustration, but we have to do what we can while we can.
Diddo! All my life. they kept searching for arthritis instead of lupus. well of a righteous runs in my family. they didn’t want to actually search they just assumed…then the arthritis test came back negative. unfortunately my mother never kept searching. I was 8 or 9 years old.they gave me a little white pill instead.today I think that was a steroid.it did the job and calming down…or should we say hiding it
I guess I'm one of the lucky ones. My doctor had read that Lupus was common after a long period on antiobotics so he was keeping a close eye on me. He tested as soon as I had any symptoms. He ran the full battery of tests. Just wanted to let you know that there are some doctors out there that try to keep on top of things.