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Hi there... I'm still plugging along waiting for a dx... at this point the rheumy (young, inexperienced and overworked) said that since my ANA was negative the one time it was done, she'll say it's not Lupus, because if I was that sick the ANA would be very high. She tested me for vasculitis, because of the low c3 c4, but she did the ANCA test althougth those vasculitides don't come with low complements, so... The last time I was in the hospital (alkalosis, abnormal EKG and electrolytes...my CO2 levels are still off, I seem to be chronically alkaline and short of breath with no help from asthma medicine, but chest Xrays are normal) they gave me high-dose steroids and I felt great for a few days...even the bloating went down... For this reason I wish that the rheumy wouldn't "wait" (she wants to see me every 6 months to check for protein in the urine and the complement levels... even though she insisted that if my ANA was negative, she said that if there was protein in my urine maybe she'd reconsider...so of course for about the first time in my life I had no protein in my urine, so...). Now my complement and platelet levels are back to normal, and so some of the worst rash/ulcer stuff on my hands are better, and the face rash seems to be better for most of the time..the rheumy said it could takes years for a diagnosis. Although I meet at least the 4 clinical criteria, she isn't interested in that, only the ANA. The thing is that I have still been going through other tests (dermatologist says it can be dermatomyositis, but EMG was neg., so that if it's Lupus that all of my non-specific rashes would fall into it...MRI, etc., because the neurologist says I have myelitis, with hypertonia & hyperreflexia which indicates the spinal cord... MRI was negative, so they want to do tests on the fluid, but that means going to a big medical center and being told by more doctors that it's "non-specific"...) , and every time with every symptom the other possible diagnoses are ruled out... I have done so much research to put together my symptoms (ALL of the typical Lupus symptoms...)with the abnormal tests (low WBC, low platelets, low C3C4, elevated liver tests, etc.) and it seems that everything is ruled out BUT Lupus. Add in the fibromyalgia that I have been diagnosed with, and it just comes up Lupus. I wonder if at this point it is time to stop trying to find what else it could be, and just wait for the ANA to turn positive.
What about "lymph" blood tests-do you mean part of the WBC?
Would the anti-dsDNA test be useful if the ANA the other antibodies are negative?
I have 3 kids and besides the fibro stuff, I can barely move sometimes from weakness (myelitis), nausea, etc., and would like not only the dx to be able to tell my kids what's wrong with Mommy, but also for treatment which I feel would help me...
HOW MANY PEOPLE REALLY HAVE A NEG. ANA BUT STILL HAVE LUPUS CAUSING REAL PROBLEMS?





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