HAVE TO VENT....
Okay, I've had a positive ANA 1:320 for SLE so my PCP sent me to a Rheum. who therefore ran several test and called me today and said so far I don't have SLE (my CSR, ESR and anti-phos and UA are normal except for a UTI, but there is one more test that will take a few more days called a Reiter test and they will call back regarding those results, but actually I guess they are saying I don't have lupus and are referring me back to me PCP for my shortness of breath and then I might need to see a pulmonologist. So what do I have then I feel like I'm 80 years old, daily headaches, joints in hands, hips, feet and now my neck is hurting, short-term memory prob's, neuropathy in feet and hands, rash on face, chest and abd., fatigue, achiness all the time. My friend suggested I see another Dr. but this Dr is a University Dr? Go figure! Sorry I'm just frustrated cause when you feel like crap all the time and now they are saying theirs nothing wrong with you, it's depressing. :?
that was my story for over 10 yrs..... the last rhuemy I had was an arrogant ass... I moved and went to a new dr and now he is saying the same thing.. do I even have it at all? How did other dr's come to their conclusion? So I am going to have all the tests done again and go from there.
A Reiter test is a type of test for syphilis. It is used as part of the testing protocol for lupus because many people with lupus will have a false-positive result on the test. If this test is positive, but other tests for syphilis are negative, it points to an underlying autoimmune problem, so it is included in the diagnostic criteria for lupus.
I'm sorry you are going through such a frustrating process. Unfortunately, a lot of people (including some doctors) think that the ANA test is specifically a test for lupus, so it can be very confusing when you have a positive ANA but a doctor doesn't think you have lupus. But the ANA test is just a general screening test for auto-antibodies, by itself, a positive test can't be used to diagnose any specific disease. This is because many people in the normal population - especially women -have a positive ANA with no underlying disease. Estimates vary from as low as 3% to as high as 20% of "normal" people will have a positive ANA. The ANA test can also be positive in other autoimmune diseases, thyroid conditions, diabetes, bacterial infections, and viral illnesses like mono. Older people often have a positive ANA, as do people on certain medications. So, while most people with lupus have a positive ANA test at some point, the majority of people with a positive ANA don't have lupus. It can be a very confusing issue, and most doctors don't explain it very well. But when the ANA test is positive, most doctors run what are called subset panels, looking for specific types of autoantibodies, which can be used to pinpoint whether an autoimmune disease is present.
Lupus is called the "great imitator" because it can look like a hundred other diseases, so it can be very hard to diagnose. Unfortunately, symptoms like fatigue, achiness, memory problems, or shortness of breath can occur in many illnesses - they are not specific to lupus. So when the lab tests aren't specific enough to point to a diagnosis, it can be hard to reach based on symptoms alone. Sometimes the disease is very slow moving and it takes time for the lab tests to catch up with the symptoms.
The rheumatologist should have sent a report to your PCP if he were the referring doctor. So you could ask your PCP for a copy of the report to see what the rheumatologist recommended. And if you don't feel that the rheumatoloigst was thorough, definitely let your primary care doctor know.. In the meantime, though, seeing a pulmonary specialist may help to find out what is causing your shortness of breath.
Thank you for the information. I do understand a positive ANA does not mean you have SLE, but my frustration is she is writing me off already before all my test are even back and then not even checking to see if I have something else instead just referring me back to my PCP. Sorry, I'm just frustrated because I've been having shortness of breath now for about 3 mo's even went to the ER and they discounted me as having anxiety. So now I"m back at square one again.
Unfortunately, I think many doctors overvalue the importance of lab work, tests and procedures, and don't really listen to the patient. But if the shortness of breath is the major concern at this point, then the pulmonary specialist or a cardiologist might be the best person to deal with it. Although rheumatologists are trained to diagnose and treat lupus, they tend to focus most on the arthritic aspects of the disease, so you might have ended up being referred to another specialist even if the rheumatologist did diagnose lupus. Even though I have lupus, my rheumatologist refers me to other subspecialists for just about everything. I think it's the price we pay for medical care being so specialized. Most of my experiences with pulmonary doctors have been very good - hopefully if you can get into one quickly, he will be able to find some answers and help you.
I have an appt today with my PCP I'll let you know what I find out and thanks again for the info.
I know it doesn't help...and it's on a completely different level...but I'm experiencing the same sort of thing with PCOS. My PCP says I have 'weak indicators' for it on the tests, but all the symptoms are present in full, annoying.....whatever!
I guess what I'm saying is that it happens with a lot of other things too...so I can relate to your frustration.
I hope you get some answers soon! Keep after those doctors!
So I went to the Dr. today and they did a PFT test and showed I have an airway obstruction so he's referring me to a pulmonologist. Anyone ever had any prob's with this type of problem?
Hi Morning Star!
I'm glad that you are finally getting somewhere with your diagnosis. I hope that the Pulmonary specialist will be of help to you.
Let us know what he/she says and how the appointment goes!
Please know that you are in my prayers.
Keep well and God bless!