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Re: New Symptom
Aug 21, 2016
[QUOTE=dove062476;5430116]I have been trying for years to find out what is going on and why I am in so much pain. I have already had all the tests. My RA is 23 (i need to check the paperwork). ANA is neg. Thyroid is neg. Everything is negative.
So, after having my daughter, I started having swelling in hands and feet, pain through out my body. The pain in my upper legs, thighs, has been so severe its hard to walk and my legs kinda turn in. I have migraines. The fatigue has worsened over the years. Hair loss has ramped up over the last year (thankfully I have very thick hair). Over the last year my heart issue has made itself appear more often. My intestinal issues were so bad I had to have a colonoscopy. Dry mouth and eyes. And the sun...I cant handle the sun anymore. I have to have a hat or umbrella, dark sunglasses and a white top. I cant even handle the heat anymore. The sun and heat make my body ache even more. So sad about this one. I LOVE the out doors! And a rash. Last year I thought it was fever blisters on the corners of my mouth. But they didnt hurt or burn like fever blisters. (Oral herpes). Then I went to a water park (covered up) and the exact same thing that was around my mouth showed up on my left hand. It went away for a few weeks. But it was now scaly. Then it came back. Now it has gone away again, but now it is scaly again. And here I am again, in pain. My hips hurt so bad. The thighs are aching. Of course I am allergic to pain relievers, so I take the minimum , go to the gym to losen them up. I am so back and forth on the whole issue. Not being able to get any diagnoses. I dont want to be poked and prodded. But I need to know whats going on. How do I get a doc to listen? What other tests can I get or have done to dig a bit deeper as to what the heck is going on? Everything points to Lupus! I am so frustrated! From what I read about 3% dont have a positive ana. Have any of you had that happen and still get a diagnosis?[/QUOTE]

Some people with lupus have a negative ANA early in the illness and some (up to 5%) never have a positive ANA. Your RF is elevated which could be significant for rheumatoid arthritis. Some people, like me, have both lupus and RA. It took 10 years for my ANA to turn positive after I had full blown symptoms of lupus for that long. Some other tests that would be helpful are anti-CCP for RA, anti-dsDNA and anti-smith for lupus, SSA and SSB for Sjogrens, anti-RNP for mixed connective tissue disorder. Also sed rate and CRP for inflammation, complement C3&4 for lupus, urinalysis (lupus), and anti-phospholipid antibodies (associated with lupus), CBC. All are blood tests, urine. Xray of worst joints can help too. You should see a rheumatology Dr for a thorough history, exam and tests. Something will likely show up that gives you some answers or at least clues. A skin biopsy of rash can be diagnostic too, done by dermatologist with lupus band test done (very important).

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