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View Full Version : Question about Lupus testing???



kimssmiling
10-13-2011, 07:50 PM
Hi everyone. I have a question for everyone on here. Did anyone test negative for Lupus then later test positive? I just found out that my pain-
management dr tested me 2 yrs ago for Lupus and all the test came back neg. NOW 2 yrs and endless pain and suffering it's positive. I mean I was told 2 months ago now that I have SLE. I'm so confused about all this. He acts like the rheumy doesn't know what he's talking about. I mean I have walked away from the rheumy that diagnosed me with sle and found a new one because he was a jerk and wouldn't answer any of my questions or concerns or even return a phone call when I started having seizures.
If anyone else has been through this please let me know. I find it crazy that I didn't know I was tested for lupus and it was negative 2 yrs ago, but
positive now.
Dang that feels better to get that out there...lol.
Thanks all,
Kim

Gizmo
10-13-2011, 08:10 PM
Hi Kim. It is actually very common to test negative for a few years, even though you have lupus symptoms - at least among the folks who post here. I had symptoms for about 8 years before I was finally diagnosed and had a positive ANA. The thing is, there really isn't a single test for lupus and technically you can be diagnosed without ever having changes in your labs. Our amazing moderators have posted information and links in the "stickies" about diagnosis criteria that is definitely worth reading.

Lupus is not a genetic disorder, it's something that develops over time. You can have a normal cholesterol one year, and have it be high the next. You don't have diabetes when you are 35, but at 40 you might develop it. The same concept applies to your lupus labs: one year they are negative, a year or two later you have developed lupus. Once you get lupus, it can go into a kind of remission with treatment, but it's never really gone.

Doctors are just normal people, with the same (or worse) personality quirks, egos and emotional baggage as the rest of us. I can't tell you how many doctors we have gone through over the years. Once you find a good one, hang on as long as your insurance lets you! Be a strong advocate for yourself, have your questions written up ahead of time, and keep copies of all your records. Hope you continue to post here!

kimssmiling
10-14-2011, 06:45 PM
Thank you. I know there are so many test that need to be ran, I'm not sure my pain management dr knew this. HAHA. I told him that there were several test that were ran on me and ALL of them came back to Lupus. My ANA was over 1.3460 and so on. BUT the Rheumy wont send any of my results to my other drs. Thats why we are changing Rheumys. I've even sent written request for them for my own records and have yet to see any of them. The only thing I get out of him is "I
know what is best and I've been doing this for yrs now so I think I know how to take care of you. You don't need to worry over it all." Ummm Wrong Answer
Mister!! I know my family and I have a long road ahead to get my meds right and me back on my feet. I'm glad to know that I have "We Have Lupus" to help
us.

Gizmo
10-14-2011, 08:06 PM
Wow, that is some ego that doctor has! Kind of makes a person wonder what he is hidding, though. Why wouldn't he share that information with your other docs? Kind of weird. Sounds like you figured all that out and are on the way to someone better.

tgal
10-14-2011, 09:19 PM
Thank you. I know there are so many test that need to be ran, I'm not sure my pain management dr knew this. HAHA. I told him that there were several test that were ran on me and ALL of them came back to Lupus. My ANA was over 1.3460 and so on. BUT the Rheumy wont send any of my results to my other drs. Thats why we are changing Rheumys. I've even sent written request for them for my own records and have yet to see any of them. The only thing I get out of him is "I
know what is best and I've been doing this for yrs now so I think I know how to take care of you. You don't need to worry over it all." Ummm Wrong Answer
Mister!! I know my family and I have a long road ahead to get my meds right and me back on my feet. I'm glad to know that I have "We Have Lupus" to help
us.

There is an open records act in the US. You can request ANY records be sent to ANY doctor or you can just get them yourself and take them over. I would threaten to call a lawyer since he is breaking the law. I am sure the records would be sent quickly. However, one of the first things I learned is to always have copies of all of my tests. I also get a copy of all of my medical records from my doctors. I keep them in a file and take them to every doctors appointment. It helped me tremendously.

mdawncooper
10-16-2011, 04:57 PM
I would definitely remind that doctor that your lawyer is going to ask for them if you don't get them immediately. I have been amazed at which doctor tested for what as I have been gathering my blood work up over the past week.