I am unsure about posting this. Got the rest of the test results from MyChart. The ANA tests were negative along with negative results on the other autoimmune tests. I am pretty sure the first thing that I will be told is that I don't have lupus. Which is a great thing. Doesn't change the fact I am hurting. I know other possibilities are the vitamin d deficiency or fibro. It took a lot to accept the lupus dx and now to find out that if the last dr had done any follow up blood tests in 2 1/2 yrs., this may have been figured out sooner. I lost a great paying job because that Dr told me I needed to resign. I know I should just be thankful, but I think about what I have been through the last couple years and it hurts. Maybe now I will get better meds that will actually help me. I told a friend about the results and got the comment that now that I'm not sick I can get on with my life. I know it was meant well, but I still have pain. I guess I am just feeling really confused. I go in Tuesday to go over everything with the new dr and will go from there.
Keepgoing, your pain and illnesses are very real. I am of the humble opinion that symptoms speak far louder than any lab test, and have experienced false negative lab tests myself. It all really depends on the doctor. And some people have negative tests like ANA's but truly do have lupus. I wouldn't wish this beast on anyone, but lab work is not fool proof, and some of us despite having truly serious symptoms, may not test out like the usual patient. I could give you a list of my own weird lab results, but too tired.
Secondly, some people do get misdiagnosed, only later to find they are dealing with a different disorder or disease. When that happens it is a blessing, and they then can get proper treatment and move forward.
So please know, although your friend meant well, they do not grasp your situation. Take a few deep breaths, do something to stay occupied that brings you joy while awaiting your appointment, then see what your doctor has to say.
hugs, Louise
5-10% of people with lupus do not test positive. Mine was confirmed through a skin biopsy when I had a bad flare on my face. They don't know exactly why people test negative. One scenario is sometimes we are so allergic that we are given steroids off and on for years. They discovered those people were testing negative even though having lupus. There are some who will continually test negative. (this is just from material I have read through the years or things I have been told). We recorded flares with photos. You might try a dermatologist if you get the lupus looking rashes and they can help you determine too. I went to Vanderbilt. Sometimes teaching hospitals are very helpful in these instances.
Keepgoing
The first time I saw my rheumy, he diagnosed me with RA. When I returned for my follow up in 3 months and new bloodwork, he said he didn't know "what to call me?" It looks like RA but the bloodwork says Lupus, so Lupus it is. After that shock, I picked up a book about Lupus and the best advice I got was stick with your first diagnosis. I have learned to avoid the sun, and protect myself from its affects. I've changed my diet, and exercise more.
I do also have a Vit D deficiency, and was recently diagnosed with Fibro on top of this. My Rheumy thinks my Fibro is my biggest problem right now, and he gave me a new prescription for it. It has helped me, along with increasing my Vit D, and cutting out processed foods.
If you have your medical records and results from your first doctor, be sure to take that in with you to the new doctor so he can see your history. Whatever your diagnosis is: You are always a part of our LWL family!
I have had neg and positive results for lupus my doctor sticks with the lupus diagnosis because of the rashes and other symptoms. I also have fibro and arthritis. People mean well they just may not understand what all is going on. It is interesting about the steroids I have had many doses over the years do to asthma and fibro flares. I hope all goes well at the doctor.
Back to square one. The Dr said I do not have lupus (yay). he said I shouldn't have been diagnosed with it based on 1 positive ANA test, rash on neck, and body pain. the only thing that he was concerned about was the vitamin d deficiency.. he did put me on 50,000 iu of vitamin D for 12 weeks and said to follow up with my primary about fibro and get off the meds I am on now. he doesn't treat fibro patients. I should be celebrating, but I just feel numb right now.
Saw my pcp. showed him test results. He doesn't want to consider fibro until we see if the vitamin d makes it go away. I asked about going off some of the meds that aren't really doing much for me. He left it up to me. guess I should just be thankful and let it go.