Update on rheumy visit

Hi guys! Well I saw my rheumy last Friday. His pa said that it doesnt really sound like lupus, whatever. Nice though. Then my doc came in, reminded me of singer Donnie Iris. Asked all sorts of questions, said who told u that u have lupus? I said my last PCP said weakly positive, my current pcp is adamant I have it based on lab work recently done, and the fact that has what's been on my reports each time. So he told me that they are going to run a specialized test....starts with an A....among others. 9 vials of blood. Usually it's between12 and 14 vials for me so I lucked out. Lol! Have any of u had this test and what does it tell you? Thanks all! Next appt is 12/5.

Same thing happened to me at the rhuematologist yesterday. Makes you think that you are crazy. They drew more blood and took xrays...everyone still insists that its inflammatory arthritis but what kind who knows. Good luck.

probably ANA, antinuclear antibodies. thing is, that test is NOT the be-all end-all for lupus. You can get a positive and NOT have lupus, or a negative and you DO have lupus. there is NO LUPUS TEST! I just want to shout that from the rooftops.

This is from the Lupus Foundation of America: How lupus is diagnosed.


For some reason in the last decade, they have been trying to withhold the lupus diagnosis, and also "undiagnose" people with lupus. I wish I knew why. It feels like some kind of weird conspiracy.

In the end, I just use my doctors to monitor my condition and if needed, write prescriptions. But I do my own thing. I have done every kind of alternative medicine you can think of. I decided if they are wrong about so many things (you have lupus- no you don't- yes you do - no you don't!) and the only solution they have is to squash my immune system, then I'll just go to other places who have solutions, at least as far as long-term solutions go. I've been on prednisone and it saved my life, but i've gotten off it all 3 times as fast as possible (within 10 months).

When I first got diagnosed, I went a support group and looked around and listened to all the problem people were having as a result of long-term prescriptions for lupus. I did not want to end up in that position!

Now I am on a fantastic nutritional/ detox program and haven't felt this good in years. My chronic pain has disappeared! I am slowly weaning off the cymbalta I was using the try to control the pain (only worked for about a month) and also cutting back on the klonopin which I use to sleep. I hope one day my tests will be so great that there is no sign of lupus or autoimmune anything, or inflammation in my system.