FOR those that were ANA negative.....

WERE you Anti RO possitive or Anti- DNA Possitive? Was ANY bloodwork possitive?

My Dr told me, it was almost impossible to be negative on all the bloodwork......

TY!  :-)

 

Hi Okie,

I think you may have misunderstood me......My Dr said it was just about impossible for someone to have "ALL" the bloodwork come back "Negative" (Not possitive) & then find out later they have lupus.

In other words, out of ANA, Anti DNA, Anti Ro, ALL  tests negative & still have Lupus.

Hopefully I clarified that. Sometimes the typing lingo gets funny, lol.  :-)

 

Hi RedRose,

May I ask how you were diagnosed then?

None of your labs were possitive? ANA, Anti-Ro, AntiDNA, ESR? NOthing??

Thx!  :-))

Hi Nasalady,

Must be strange to be given a diagnoses And then have it taken back.  What is his reasoning for the positiveDS DNA?

I've never heard of Lupus like autoimmune disease........

Yes, i did read that Medications to treat Lupus could lead to a Negative ANA.

 

 

LOL Oakie!! You are funny! I sure hope you get a good night sleep & feel better in the morning!

Gnite!

Confused725 said...

Must be strange to be given a diagnoses And then have it taken back. What is his reasoning for the positiveDS DNA?

I've never heard of Lupus like autoimmune disease........

Yes, i did read that Medications to treat Lupus could lead to a Negative ANA.

Well, he didn't really give any reasons.....just smiled his little smile and said "It's not acting like Lupus". Which makes me crazy because why is he calling it a "lupus-like autoimmune disease" then???

Now, mind you, he's my third rheumy, and until recently I've been very happy with him. I would even be OK if he told me that I didn't have lupus, if he would just bother to explain WHY he thinks that. Unfortunatley the last time I saw him I was totally brain-fogged out to the point of being almost incoherent. So I didn't ask him any intelligent questions....

I did take the advice of someone here on the forum, called my local lupus chapter, and got the name of of a rheumy who is on their advisory board. I looked her up on the Internet and all of her patient reviews are great. So I have made an appt to see her for another opinion. If she also says I don't have lupus, fine, I don't have lupus.

I don't really want to have lupus.....two of my aunts died of lupus nephritis and my youngest daughter has SCLE. I already know it's no fun to have lupus.

I guess what ticks me off is my rheumy not explaining himself, as if assuming I wouldn't understand him???

lucysgd said...

JoAnn - I have heard a variety of things about ANA, so I guess it depends on which rheumy you're talking to. Here goes:

ANA, once identified as positive and part of an autoimmune disease process, doesn't need to be continually tested for because it is not an actual indicator of disease activity. As in, it might be high when you aren't feeling so bad, or lower when symptoms are driving you crazy.

Treatment with Plaquenil and immunosuppresants may alter (modify) the ANA .

A positive ANA is an indication of autoimmune process, NOT fibromyalgia.

A positive ANA might simply be reflective of Fibromaylgia.

If you have two negative ANA's following years of positive results, you no longer have a connective tissue disease.

The first two statements I believe to be valid and easily substantiated. The latter three come from the rheumy I've been seeing for 3 years and am finally giving up on. Too many conflicts. I understand your frustration. My ANA became negative one time recently, after a year on Plaquenil and switching to a gluten free diet for 6 weeks. It then reverted back to + 1:320 within 6 wks. Which is still better than the 1:1280 that I started with. What does it mean? Beats me.

Thanks Lucy, it's always good to know I'm not alone in being confused by my rheumy! I hope you find a new (and better!) rheumy soon!

(((hugs)))
JoAnn

Hi! Everyone,

My 20 year path to my diagnosis started out with horrible sun sensitivity as a teen-> frequent infections 20's, stillborn son-> Group B strep and staph sacrilyticus after 2 healthy daughter's born-> 5 miscarriages at 8 weeks-> antiphospholipid antibody syndrome dx-> antithyroid antibodies-> Hashimoto's thyroiditis dx-> frequent falling, MS ruled out, menopause ruled in-> respiratory infections every 4-5 months->positive ANA and falling in public couldn't be ignored any longer paired with scary HA and real scary hi B/P->immunologist agreed with NP-> lupus. Not everyone is so lucky, at least I knew why I had lost my babies. And, in my role as a nurse, I worked with the drs. and professionals who believed me when I said I was not depressed, and sought a reason for the so often subjective symptoms I was complaining of. ( Subjective meaning subject to the patient's perceptions, where Objective symptoms are what drs. are in the mindset to look for... i.e. increased pulse or blood pressure, edema, impaired nerve conduction tests, positive CATS or MRIs, positive or abnormal labs. Bottom line, you can have a dx. of lupus and have every test be within normal limits, once I started plaquenil and prednisone, my ana titre went way down, and routine testing on an inflammatory panel "normal". But my dr. insists on doing bloodwork every visit, and I am going with a list of new autoimmune tests I have read about to add to the list. Like... TPO-Ab, chromatin autoantibodies, thyroid peroxidase, then ask him what SREAT is, and ask about the time frame connection to stopping prednisone or other suppressives and a resurrgence of the autoantibodies used to confirm a correct diagnosis, I am being forced by illness to consider permanent disability, and I am told the SSD denies everyone the first time around, and that lupus is one of the toughest diagnoses to get approved.  He suggested my APS would be what they would look at first. In med school they teach lupus is the great imitator, and in nursing school I learned that lupus is a diagnosis of ruling everything imaginable out first. And during the course of my fight to find out what was wrong with me, that since it flares, becomes noticible, then abates, periods where symptoms disappear, you get the now you've got it, now you don't  dilemma. And tired of fighting being so sick.

suetoo

I just want to mention to you that I met a woman at the Neurologist office that was negative on ALL her lupus blood work - but actually has lupus. I guess 5-10% can be negative with bloodwork but have lupus.

Hugs

Sue