Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Shelburne, ON

I feel pretty strongly that I have Lupus, but my blood work does not say so. Therefore, I am struggling with a diagnoses.

March 14, 2017
 · 
Reactions
A MyLupusTeam Member

If the ANA is negative, it is recommended that no other testing be done for SLE unless clinical suspicion for SLE is high. ANA negative Lupus is very rare I beleive less than 5 %. However, I think occassionally those who are ANA negative sometimes test postive when the follow up ENA panel is done for Anti Ro/ SSA and anti phospholipids. Also I think a biopsy proving lupus nephritis is enough for definitive dx.

If ur ANA is +, but the ENA's such as DS DNA and SM are negative, you can def. still have Lupus. Most rheumatologist only check for the most common ENA's such as DNA, SM, SSA, SSB when there are 100-150 different autoantibodies.

The gold standard for dx is a rheumatologist. However, all the rheumatologist's I have went to have been very difficut :( But other dr's that can help are usually pcp's, nephrolologist, dermatologist.
If no SLE, it doesn't mean ur sx aren't real. Their are many other AI's out there.

March 15, 2017 (edited)
A MyLupusTeam Member

There are different tests and you can have a negative one time and positive another. There are symptoms that can also help make diagnosis a little easier. For years my blood tests showed negative but I kept getting more symptoms.... photosensitivity, ulcers in the mouth, awful fatigue, joint pain, other unexplained pain, mylar rashes and others. One I reached 7 of 10 symptoms, my doctor made the diagnosis. Funny thing is that just after he made the diagnosis, it DID show up in blood tests.

March 15, 2017
A MyLupusTeam Member

I had a skin swab taken as it didn't show up in blood

March 15, 2017
A MyLupusTeam Member

Dear new member...Keep a journal write down your symptoms
Dates ...share with your GP... my experience
... routine bloodwork .... the dr had done labs
And suspected Lupus ... then referrals to rheumatologist and dermatologist...it was a shock when she said Lupus....I suppose it still is ... good luck...

March 15, 2017
A MyLupusTeam Member

It took a while for it to show it self it's a hit and miss thing stay strong . My Dr told me it's like riding a roller coaster you just got to get it at it high peak but they new I have it because they removed the bottom of my right lung and it tested positive for lupus and other things but it was hard not knowing what was wrong with me

March 15, 2017

Related Questions

View All
A MyLupusTeam Member asked a question 💭
Larsen, WI