I exhibited almost every single symptom but was receiving negative test results. They finally started to come back positive after a time when I was really sick. It can be hard to catch with a blood test. From what I've read it's pretty much impossible to 100% confirm somebody has Lupus, but if you have enough symptoms and respond to treatment they just call it. Even with a negative blood test you can still have Lupus.

A doctor suspected I had Lupus in 2006, but blood test results were always negative. So after I had a rash for several months (end of 2010 and beginning of 2011), a dermatologist ran skin biopsies, which indicated the Lupus. From what I've read, a negative blood test does not mean that you don't have Lupus. My understanding is that some people have Lupus, but blood work is negative. Some people have positive blood work, with no signs of Lupus. And others with Lupus show positive blood work one time, but negative blood work other times.

I tried to tell my doctor recently that patients with lupus can test positive or negative at different times with the ANA test, but she got so angry at me that she turned around and walked out of the examination room without saying a word. She has always insisted that a negative ANA is absolutely final, I can't possibly have lupus.

All the doctors I've seen told me essentially the same thing. To be honest, I don't think any of them have the slightest idea about what they're doing. So despite all the lupus symptoms I have...no diagnosis. And currently I have no doctor, tired of giving money to people who know less than I do.

I've read a lot of very authoritative books and articles about lupus, and based on that reading, you are absolutely right in what you are saying, Nanny.

My doctor thought I had Lupus in 2005. I had no ANA markers. By the time my ANA was positive I had 10 of the 11 markers.
I was diagnosed Feb. 6, 2008. My doctor says he is sure it went back 10-15 before that with the different medical incidents I had.
But I do agree that some of these doctors are clueless, lazy or both.

Very frustrating when dr's dont listen ....almost a hopeless feeling for sure ..maybe if a person enters the dr room confident and pro active about there health rite off the bat ...maybe they will listen ...richied ..having a dr walk out of the room on you is almost against a dr's ehtic code.
Tami

hi..i just wanted to say that im searching for answrs,negative blood work and its been done every month for 5 months,my potassium is very low,i run low grade fever ,knees started hurting past 4 months,....i gained 50 pds in past 5 months...help here please

@Miranda1211
Welcome to this forum of nice people. I am fairly new on this Lupus forum also, although I've been part of Daily Strength for a couple years, so I'm still learning. I'm sorry that I can't answer your question, but here is a link to a Lupus website. This particular page deals with joints and muscles, but you can visit some of the other pages for more info. Hope you can find answers here.
http://www.thelupussite.com/fact7.html

thanks nanny...ill look it up although im also going to read more threads...hope your well...

miranda1211...i test negative every time too..and my dr says that the lulus test is pretty accurate ..i dont really trust that ..i trust my instinct so for yourself maybe you should get a second opinion..and then treat yourself as if the test was positive and do research..eat differently ..do what they recommend in your research for lupus until you get a positive answer , if you wait for the dr to tell you a for sure answer you may have serious damage mentally and physically ....it took me many many years to get a remote form of a answer now my health is crappy because of it, its like a race against time .
tami

thank you tami.....i am looking for another g p and my health is shot now,,,,gained 50 pds in 5 months,can barely walk on my poor knees...cant breath

well..so much else,my dr yesterday said"why are u complaining so much"..well he is fired!!!...thanks tho,im going to have to do alot different but i hope i can learn from yall!!!

hugs

I've done what Tami said...assumed I have lupus and acted accordingly. I'm careful not to get too much sun, eat nutritious food, avoid going without adequate rest and sleep, exercise moderately and regularly, and so on.

It's really made a difference for me. I'm a long way from being cured or in remission, but the really bad flares have not been happening like they used to.

Should have mentioned...I avoid toxic people and stressful situations, that's a big one. Looking back on my life, all the really big flares coincided with getting a lot of sun and/or stress. It's not been easy to avoid stress, I've had to learn to live on very little money.

All my labs have reverted to normal.

I had low C-3, low C-4, positive Anti DS DNA, 1:600 ANA, high CRP and anemia.

I stopped eating gluten, flour and processed foods. Not much dairy, rare red meat, and little sugar or salt.

I feel a lot better.....but I still take meds...

Myfortic, Plaquenil, Arava and prednisone 6mg. Weaning slowly off prednisone.


Having inactive lupus is SUCCESS!! CONGRATULATIONS!!

and I try to do everything that RichieD said in 11----avoiding sun especially.

Avoid triggers....especially stress and toxic people. haha

Hi,
I'm sorry you have to leave a good dr. I have normal tests results mostly. My dr keeps me on low doses for treatment even then. I get tested regularly. I see a rheumy as a general MD and a Nephrologist too, since I had problems there too. When I was young I went to hematologist, since my blood didn't clot. What am trying to say, is I have a rheumy dr and one for the specific flare problem at whatever time. My flares, although infrequent, were severe.
I follow a mainly fruit, vegie diet, little meat, little grains. I eat rice , rice chex cereal, low dairy , low caffiene. I find that diet matters a lot with me. In some ways I am lucky because I love chopped veggies with greek salad dressing and I love fruit. Also, good rest matters (and this is where diet helps me too.). I don't eat pasta - it wrecks my sleep.
I think it's good for each dr to know where you've been treated. As more info comes out for treatment and about of other diseases (like kidney for me), a good dr will keep you in mind when they learn knew things. I was suspected to have lupus 40 years ago when I was 17. My doctor treated me anyway. Back then they used the sed rate test only. Mine never left normal, however when I feel good -my normal is the bottom of the scale rather than top when I feel sick. Good luck to you with your new dr.

i agree with Ruchie ..get rid of toxic people and stay away from stress as much as possible ....i added more fresh foods and less foods with preservatives and it seems to be helping ..and for the people , i avoid toxic people ..i hate to admitt this but i made a small check list of people who were stress factors (negative people ) and i avoid them no matter what , i might feel a little lonier but at least im helping myself be healthier in all aspects ..so good luck ...stress is a killer for sure in all diseases ..
Tami