I answered this question before, but could not find it in the Q&A.

Part of my reply is that other autoimmune diseases like fibromyalgia and multiple sclerosis mimic lupus in their symptoms. Each doctor has their own idea of what lupus looks like. Some may go simply by lab results and others look for you to have at 3 or 4 of the 11 criteria for lupus. That was the "old school" way of getting a diagnosis. The AVISE test is now used by some doctors. It may or not be conclusive. I have had lupus for over 35 years and had my first AVISE test two years ago before before starting Benlysta. It is an expensive test but worth exploring with your doctors. Nonetheless, it is complicated to get a firm diagnosis when our symptoms change from day to day. Many times, it just so happens that we may be having a good day with low inflammation markers the day our labs are done. Don't give up trying find out what is going on with your body. I have seen a lot of people told they don't have lupus years after a diagnosis. Seek a second opinion and a third to be certain. Hopefully, one day there will be a simpler way to get a firm diagnosis and a cure for all of us.

Drs tend to try and run tests they can prove thru labs and rule out big bads that they can first. They are also divided on whether fibro is an auto-immune issue or a neurological disorder. Every dr I have ever discussed my symptoms with is torn on the reasoning, some say Lupus some say it is fibro. I used to try hard to differentiate between my diseases, but after 13 years, I just know I feel like crap and do my best to treat my symptoms and help myself feel better.

I understand that each is unique, and lupus symptoms mimic other illnesses, but all of the tests can be done in less than 3 months with insurance and a few more months without it.
I think there are other reasons, like doctors do not refer the patients as soon as they analyze the symptoms and the results of the tests. Another reason is that some patients are not proactive or do not take their health as a priority. Also, the disinformation is an obstacle, the cost of the medicine, and the costs of the new research.
But, despite all these reasons, I do not understand at this point in the decade why a person has to suffer for years until they are diagnosed.

Yes, @A MyLupusTeam Member is correct, it took more than 10 years for a Lupus diagnosis. I’ve had symptoms for years, ANA always came back negative, but finally one day out of the blue it came back positive, and it continues to be positive every time I get labs done. Same thing with RA as well, even though the symptoms are not very severe. I have all the criteria for Lupus, and almost all of my body parts have been affected by Lupus in some way or another. Right now it’s hitting me hard in my heart, gut, skin, bladder, liver and pancreas. My sister has MS and at times she has Lupus symptoms, even though she doesn’t have Lupus. Yes, it can be very complicating to get a real diagnosis and fitting all the right pieces into the puzzle can be a real challenge .

Mentioned Users

A MyLupus...