WHY IS #lupus SO HARD TO DIAGNOSE? SHARE with every frustrated person you know who is going through a rough time getting a diagnosis. QUESTION: Puzzled in Ohio asks: Why is it so difficult to diagnose lupus and all the disease that go along with it like shrinking lung disease mctd Raynauds fibromyalgia And what does the tests show that makes the doctor say for sure this is what you got . I have been to numerous doctors and I keep getting more added to my diagnosis but theres no treatment??? Puzzled in Ohio ANSWER: Dear Puzzled. I can certainly understand your frustration. As a physician who specializes in lupus, Ill have to admit that I often feel frustrated when it is hard to make a diagnosis as well (and I am sure some of your docs feel the same way.) The only 100% way to make a quick, accurate diagnosis of lupus is if someone has kidney inflammation (nephritis) and we get a kidney biopsy that shows lupus, or if someone has a specific lupus rash that shows lupus on the biopsy. Otherwise, we are stuck with using criteria to make the diagnosis. Someone needs to have 4 of the following 17 criteria (these are the newer criteria = better than the old criteria): rheumtutor/2012-slicc-sle-criteria/ Unfortunately, many of the connective tissue diseases (systemic autoimmune diseases) share many of the same problems: - Raynauds - Joint pains - Rash - Fatigue - Anemia - Low white blood cell count - Antinuclear antibody (this is seen in all of them, not just lupus!) - Rheumatoid factor - High ESR - RNP antibody - SSA antibody (The connective tissue diseases = lupus, rheumatoid arthritis, Sjogrens syndrome, scleroderma, polymyositis, vasculitis) Yes... all of those can be found in all of them, so we must rely upon criteria to make a definite diagnosis. In addition... other disorders can mimic the connective tissue diseases... Kikuchis disease, Lyme disease, parvo virus, fibromyalgia, chronic fatigue syndrome, thyroid disease, and even (dare I say) cancer, etc.... compounding the issue. Another compounding issue is that it is common to have an overlap syndrome where someone can have more than one of these (for example, it is very common to have both Sjogrens and lupus or RA) Although lupus and related diseases can come on explosively and quickly reveal themselves causing lots of problems at once in order to make it easy to satisfy criteria... way too often they tease us with one nonspecific problem at a time. Toni Braxton (who has SLE) said it best in an interview once, You have to wait until everything comes together perfectly before lupus can be diagnosed ... yes... even a world class star who can afford the best doctors in the World had to go through her own trials and tribulations and threats of a heart transplant before the right diagnosis was made. Although we have come far in medicine... we have a long way to go. As far as there being no treatment ... all of these do have treatments (except for scleroderma for which we are still in search of much better therapies). What I mean by that (for example) is if someone gets inflammatory arthritis and if we know it is from a connective tissue disease, but do not know exactly which one (lupus or rheumatoid?) .... we still are able to treat it. You may need to take all your records and all previous lab results to a good rheumatologist to help sort it all out and get you some good treatment. I hope this helps, and I hope you find a good doctor that will be your advocate to put all the pieces of the puzzle together to get you some help. Here is also a good, related article that I helped work on with Mollys Fund Fighting Lupus: mollysfund.org/2014/06/mixed-connective-tissue-disease/ SHARE with everyone you know by Donald Thomas, MD lupusencyclopedia@gmail facebook/LupusEncyclopedia
Posted on: Wed, 24 Sep 2014 12:31:21 +0000
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