Has anybody been diagnosed with lupus with a negative ANA?

[Kiara]

I've only met 2 persons, and obviously myself!!! Hope to read from you guys!!!!

[Butterfly Kimberly]

Hi Kiara,

so what did the other two people say that their docs did??

[Kiara]

yes!!! but they haven't found anyone else!! thats why i'm curious!!! but i guess that i should trust my drs, right???

[Michelle]

Hi Tracey,

I came across this site because I have alot of symptoms that appear to be lupus, but my ana has been negative for over a year now. My bloodwork seems to be fine as well. I am curious about how you received your diagnosis without a postive ana. I have read that while some people with lupus have negative ana tests other lupus tests will be postive ( such as the smith and ro/ssr). I have a rash on my face and I am thinking I would like them to take a skin sample to test. I am out of ideas!

Thank you!

[Debbie]

I have been negative for a long time and the drs are telling me that I don't have lupus but i have all the sysmptoms of it i fall right into the right criteria butterfly rash joint pain just all round feel like crap as of right now have had a migraine headach for the last 2 weeks but i try and keep going taking what i can as i have to be careful not to mix to much with heart meds and some of them make me sleepy. So now there is a third strange bird here in the group LOL best of luck debbie

[Kiara]

Well at last!! jajaja!!! it seemed to me so funny or weird, because my drs are all like surprised or amused!!! They've done the ANAS like 3 times and gues what??? they've come out negative every single time!!! My rheumatologist is kind of uncertain d to the fact that the only symptoms I haven't had are like 2, but from there on, the last time I was in the hospital, I was there because of severe swollen joints, vomits and muscle pain. I was there for a whole week. But even seen all of that my rheumatologist hasn't made a clear diagnostic; the only one that is really certain that its Lupus is my gastro. But I've had awful swollen joint pain accompaniedby muscle pain, everlasting headaches, nauseas, hair loss (that started about a week ago and freaked out and started to cry like crazy), rash, bruises, ulcers in my mouth that don't really hurt, ect. The latest new thing is that the joints that are between the vertebrates or something like that, are swollen and I get this horrible back pain that sometimes I have to call my mom to help me get out of bed!!! Oh!! I also have sun sensitivity! which I hate the most, cause I loved to go to the beach to get tanned and of course I can't anymore, so now I'm all pale!!! jajaja!!! And so much more!!

And yet they haven't come to a diagnosis. But please wish me luck, tomorrow I'm going to get a second opinion from a rheumatologist!( which I kind of wasn't to happy when my mom gave me the news, because I've come really close to the one I see now)

Thanks guys!!! love you all!!! hugs and kisses!!!

[Mary E O'Rourke (Libby)]

oh honey, I can imagine how you feel. I was dx'd in 1987 and had to leave work in 1989. Not worked since. I was in my 40's when the rash was running my bones on arms,and legs. I wore long sleeved and dark stockings so no one would notice. my typing was terrible, I cried over everything. I was not able to study either just to keep my job Needed a real estate license for management service to do the job that was my job. I had a high ANA then but now an rheumie says I do not have Lupus or osteo arthritis either. Had an dermie take some of the elbow for testing and it says I only have dermatitis. The pain is bad some nights so much so I cant sleep. Family troubles have been dumped here too along with financeil stuff too. Im too old for all this stuff. I was dx's with fibro too now and had some sleeping eleval or?? cant remember name. I cannot afford my meds. Hubby is much more sick that I am with heart and alzheimers,3rd stage.was on 22 meds per day . Wanted only to stay our of the hospitals. I have headaches too. had so many sores in nose and mouth all the time was not able to wear my false theeth. have stayed obese since my children(5boys) no girls lost three of them. tired is just another days worth of pushing myself. oh see if the sores can be given to you with Valtrex. I took it for 3 years helped me a lot. still break out but not nearly as it was. so much more to tell but getting late for me... God Bless honey, Dont give up it seems to be our long drawn out fight just to be seen and understood in the world. You can get some more info at National I Health.gov or forgot maybe someone will give you more info as to where to go. NIH is government sponsored so some info there can help you out with some questions too. My best to you sweetie. Libby

[HEATHER]

I was diagnosed with a postive ANA in 2002 however, I havent had a positive ANA since 2004. I actually had one DR. in "05 tell me I did have Lupus anymore and that I was just depressed and needed a script for PROZAC! Needless to say, I found a new dr and she said that I still had Lupus. But now they aren't sure. Earlier this year, I was sent to an Endocrinologist. I was diagnosed with severe hypothyroid and PCOS. Alot of the symptoms that I was attributing to lupus was actually the thyroid and PCOS. I get tested regularly and no positive ANA but my DNA tests keep coming back abnormal. So I have been told that I have an autoimmune something, they just don't know what it is.

[Roose]

http://lupusbutterflies.ning.com/xn/detail/1301214:Comment:131827

[Rebecca]

Yes, actually...I had an ER Doctor first suggest to me that I was exhibiting the symptoms of Lupus. Never heard of it before then. Then I saw a rheumatologist who treated me for Lupus even though my ANA came back negative TWICE. I was not given a firm diagnosis of Lupus until I was hospitalized a couple of years later by 3 different doctors specializing in internal medicine. Lupus is the ONLY thing that can explain all of my symptoms, the only thing missing is a positive ana. Prior to that I had just been diagnosd with CFS and Fibromyalgia. jU.S. Doctors tend to cling to that test like it's so solemn, but I now know better. AS my family doctor says: If it walks like a duck, acts like a duck, and quacks like a duck..it's probably a DUCK..(AS in my Lupus symptoms and my response to lupus treatment is what seems to confirm that I have it, not some rather unreliable blood test. I know how frustrating this can be. Take care! ~Becca

[Sparrow]

I have negative ANA, and while they haven't given me a definite diagnosis, the doctors are all treating me as though I have lupus. Kind of like what Rebecca said, if it walks like a duck...
I have RA, Hashimoto's, and Sjogrens as well, maybe more for all I know.

[Kiara]

I am oh so thankful to God for letting me know about this site!! Kimberly has done a terrific job with this page!! This is a really good thing, we find the support we need in each other and most important we understand what we all are going through!! which mot people usually don't!!! Thank you all so much!!! Love you all!!!
*****HUGS & KISSES******, Kiara

[Melinda Tucker]

BECCA!! me too..the same thing happened to me.. oh by the way i had to get a mega steroid injection today. ewwwww.. and have more labs done..but im so glad to know im not the only one who went through that :) peace..MElinda:)