Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Does anyone have ANA negative lupus?
I think that is what it is called. How did you get diagnosed?
I have many symptoms of lupus and would like to talk
To new rheumy about this possibility but I am scared
To bring it up. I made a list and I guess
That I will just give it to the new rheumy ...
I think that is what it is called. How did you get diagnosed?
I have many symptoms of lupus and would like to talk
To new rheumy about this possibility but I am scared
To bring it up. I made a list and I guess
That I will just give it to the new rheumy ...
Since I don't have much money to spend on a series of referrals and more testing, I'll probably never get a diagnosis now.
Don't let your doctors bully you by telling you that a negative ANA test means you can't have lupus. What that really means when they say that is that they don't know what they're doing. The anti-nuclear antibody test is just an indicator of auto-immune response in the blood, not a "lupus test".
The problem is that doctors have no training in science, so when they try to interpret scientific information, they do it as amateurs. They don't know how to interpret statistics like the often-quoted statement that "95% of lupus patients test positive on ANA." This statement does NOT mean that an ANA test is a screening for lupus. Lupus patients often show negative ANA results, but test positive for lupus in other ways.
What it does mean is that statistically, 95% of lupus patients who are monitored with repeated testing eventually show a positive test. And that still leaves one out of twenty that never do show a positive test. So on any one particular test at a particular moment in time, a person with lupus will test positive at a much lower percentage than the often-quoted number of 95%.
Doctors are trained in liberal arts and technical things like anatomy and diagnostic techniques, not science. An education in science is much more rigorous and demanding of a student, and includes extensive training in the interpretation of statistics. At the graduate level it also includes the skills needed to actually conduct a research project. Doctors get none of that, so research projects done by doctors are often useless and misleading. They can be well done, but they are often what scientists call "junk science".
I was officially diagnosed ... FINALLY ... with ANA-negative SLE a few months ago by a local rheumatologist.
I have always had negative ANAs through the years and was sent on my way by many doctors.
I saw this rheumatologist for the third time in 2 years and I kinda lost my cool with him when I knew he was going to pat me on my head and send me walking. I told him I KNEW something was wrong ... even if it was all in my head ... but someone was going to help me figure this out! Years of rashes, fatigue, hand puffiness, coughing (swallowing difficulties), protein starting to show up in my urine, etc.
He agreed to do a few more blood tests (I think I scared him with my 'request' for help figuring this out!!).
Again, my ANA was negative ... BUT ... I tested positive for the anti-Smith antibody and anticardiolipin antibodies. Lo' and behold, I also had a positive antibody for dermatomyositis, so I have both lupus and dermatomyositis. I had so many mixed emotions once I finally got a diagnosis (or two!).
My rheumy said only 2% of patients present this way (with a negative ANA), so this was a particularly frustrating and challenging case to diagnose.
So, please keep asking for help. I think we know when something is really wrong ... but the docs sometime only look at a blood test or two. It's maddening ... but you need to remain your best advocate!
Good luck!
Want to say on it. I will read it to the next rheumatologist
I don't think they will send me away saying nothing
Is wrong but tell me it is inflammatory arthritis which
Could be either RA or lupus. My concern is all these
Other issues I am having.. Could I really have inflammatory arthritis,
photosensitive issues,
Rash issues and kidney issues, chronic dry eye and migraines that all don't belong
To lupus ? That's a weird coincidence ang I guess
I should be happy... But I can't shake the feeling that it is all related
Personally I would give more credibility to that number than to the numbers given out by doctors who have seen relatively few lupus patients in their practices. I tried to trace the origin of the commonly accepted notion that negative ANA lupus is extremely rare and found out that it probably comes from a medical textbook, not from a research paper.
Textbooks used in technical courses are often full of errors. They are commonly written by free-lance writers with no technical training whatsoever. The people listed on the cover as authors might not even know that their name was used. I don't know specifically how accurate medical textbooks are, but I can tell you that the Prentice-Hall textbook used in an electronics engineering class I took had three or four errors on every page. My instructor, who was retired from a long career as an electronics engineer, confirmed the errors I found.
It's been my experience that doctors tend to rely mainly on information they acquired from the textbooks they used in medical school. They are often completely ignorant about advances in medical research. Before you trust what they say about something that's important to you, I recommend that you do some fact-checking using reputable sources. If too many things don't add up, think seriously about getting a second opinion if you can.
It's your health and well-being on the line, and you have every right to question what they say.
I possibly have negative ana lupus,still undergoing blood tests, but my blood seems different every time! i got a copy of a letter that was sent to my doctor and Its in medical language, so I'm not sure what it means, as i have not been told..It say's my blood has shown an ESR of 7, and before that showed an ANA 1: 60 speckled with ENA negative...bla bla blaaaaa!!! apparently its speckled as well! Isn't that pretty!!? lol! can anyone translate this? xx
Speckled results include SLE, Sjogren's, RA, and others.
They use a reagent that causes cells showing autoimmune response to fluoresce on the slide, then they count them and note the pattern of their distribution on the slide. The quality of the reagent is critical, if it's old stock, that would change positive results to negative ones. Like most people who are amateurs in the business of science, doctors don't consider the possibility that the testing lab's reagents could be flawed.
In a scientific investigation, the materials and methods are an important part of the research and are ALWAYS carefully scrutinized and evaluated before drawing conclusions. Testing labs are run by doctors, not scientists. I'm personally skeptical of all blood testing.
When samples of the same blood are sent to more than one lab, there are usually a variety of results reported. This is normally never done, it's assumed that the labs are all 100% accurate by the doctors who interpret the results. This is ludicrous.
Blood testing should never be a substitute for a complete analysis of the patient's symptom profile and other indicators. I think doctors use blood testing as a shortcut to avoid doing the hard work of being a real doctor.
At the very least, the ANA test should be repeated at three-month intervals, preferably with different labs doing the testing. That's what experts in diagnosing and treating lupus recommend. It should never be more than a small part of evaluating a patient who displays symptoms consistent with SLE.
Many doctors who are recognized as expert in the diagnosis and treatment of SLE don't even use the ANA test in diagnosis.
One way to get around this ANA dogmatism is to find a dermatologist who is willing to do a biopsy of skin or other tissue that is showing rashes or other signs of auto-immune activity. A positive result is a clear indication of auto-immune activity because it's observed directly in the lab. Lupus is often diagnosed on the basis of a positive skin biopsy. In the UK, patients suspected of having lupus are referred to dermatologists, not rheumatologists.
hank you. you are once again, very informative :)
I did have a skin biopsy done 13 years ago, and it came back as polymorphic light eruption, so i had uv light therapy, eeeek! we all know that for us lupies, uv is our kryptonite.....! so, after 1 year of travelling 20 miles a day, 3 days a week, on a bus (greenhouse on wheels!) to have like 10 seconds of therapy, my skin was so bad i looked like elephant mans first cousin !!
I actually got to see the head dermatologist after the others played around with me and tortured me for a few more years, had another biopsy, and low and behold!! Its systemic cutaneous lupus...
I was told this was just a skin lupus, and that it didn't mean i would have actual sle. With all my other symptoms, she insisted i go to a rumy. Its him that told me i can actually have 2 lupus's, and i more than likely have got them...waiting on yet more blood work. its frustrating to hear that our blood is not being tested in a proper way.
To many uninformed Dr's think and call it a Lupus test which it is not. After 6 years and 4 different pcp's telling me the rash is an allergy......all the other stuff you "say" you feel is stress. I went to a dermatologist. He looked at me and said you have Lupus.....less than 10 minutes. Her ordered a battery of ( blood-work ) tests. And did two skin biopsy's. One week later his dx was confirmed.