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!!!!

[Jennifer Osborne]

I have been diagnosed with SLE without the positive ANA. That test is nothing! First they just said fibro, raynauds, and arthritis. But I have the hair loss, skin lesions, butterfly rash, sun sensitivity, muscle aches, joint pain, memory loss, fatigue, mouth sores, stomach problems with acid reflux, you name it I have it. Just got off a round of Prednisone and it really helped! I have to have a sleep study done this weekend because they think I also have sleep apnea. Your ANA can be positive one time and negative the next. Lupus is a difficult illness to diagnose. I was persistent and just kept right on until I got an answer. At least I found a rhuemy that believes in me and I am finally getting help. It is possible to have Lupus with negative ANA. So you can add me to your list of people diagnosed with a negative ANA but still have Lupus. :)

[Kiara]

Hey guys!! thank you so much!! I know what you guys mean! Well to give ann update, its oficially LUPUS! (BUMMER) I was hoping they were all wrong; but know I guess I'm ok with it! Well my drs said the same thing! its really common that patients have ANAs that come back negative!

To be honest I know we all have these days, but sometimes I feel mad, like crying, ect! But I'm actually dealing wth those feelings! Jajaja! sounds kind of crazy at times too!

To add it all up, I have Chron's disease! so when my LUPUS gets flared up, at times so does my Chron's! jajaj!! little by little I keep adding things to my list!!

THANKS ALOT FOR YOUR HELP!! XOXOXOXXO

[Shelly]

I was diagnosed in 1989 with a postive ANA but never really bothered me didin't have to take any meds etc. I started having trouble again in about 2006 but never really even thought about lupus. I was seeing a cardioligist for all kinds of heart problems and something was mentioned that my mother passed away in 1985 from lupus. So in 2008 he sent me to a wonderful rheumy she did all kinds of ana test but nothing really jumpedd out as positive for lupus but due to my many systems she diagnosed me with lupus. Now I have all kinds of autoimmune problems and still nothing really on my ana but the meds are seeming to help some. She just changed my chemo last week and doubled the dosage. If this doesn't make a drastic change in it she is going to consider IV chemo.

[Kiara]

Wow! I'm sorry to hear about ur chemo! if you dont mind, which one are you on?
I think we all go throughthe part when drs aren't so sure or maybe dnt have an idea of what we have! which makes it so frustrating!

[Samantha]

I was also DX'd with a neg ANA( i have had 5 done over several years).. My dr did ENA, SSA-RO and SSB-LA, the Smiths test also.. the SSA-RO and SSB-LA cam back positive.. SO based on that and my history and the CBC gave me the DX of SCLE, Sjogren's and Fibro.. After a few issues, Pleurisy and Pericarditis, he changed it to SLE..
My mom also does not have a pos ANA.. she was dx'd by biopsy , she has discoid..

well hope to chat with you soon..
*hugs*
Sam

[Kim Thrower]

Hi Kiara,
I had a ANA positive test (on the low side), but I also had the SMITH Antibody, which is only specific in Lupus, they haven't found any other disease or otherwise that has this Anti Sm antibody! I have never tested positive again for the ANA, but I have the swollen joints, loss of hair, sores in my nose, mouth, I'm sun sensitive, I get rashes, the joint pain, swollen glands through out my body CONSTANTLY, as well as organs swelling, pleurisy, kidney dysfunction and Hypertension (which could be an early sign of Kidney disease) AND I've had kidney stones, Anemia that is a come and go thing, and as it progressed I had Hypothyroidism, and Hypercalcemia, which I was treated by my Endocrinologist, and I had to go get one of my Parathryoids out, due to the Hypercalcemia (too much calcium in the blood, which can be very, very dangerous). Then my Hypothyroidism, turned into Hyperthyroidism, which I'm being treated for currently. I don't know if you're aware, but there is a EXCELLENT book that you can buy that's written by a male Dr. who has suffered with Lupus for years, and has been writing books about Lupus in terms that us normal folks can understand, and is very much helpful through out your disease, and can explain a lot to you! It's written by Dr.Daniel Wallace, and the book is titled "The Lupus Book", it has been like my bible since getting this disease! You can order them from www.amazon.com, I just recently purchased his updated book that came out in Dec.2008. I HIGHLY RECOMMEND IT for all of us Lupies!! And no, I'm not making a "plug" for him, I just am really, really happy with his book, it explains alot!! They say 70% of Autoimmune diseases run their course through your digestive tract. I had told my G.I. Dr. that I thought my Lupus was attacking my Gastrointestinal System, and he said "nope, not possible" to which I have GERD, Spastic Colon, Hiatal Hernia, IBS Constipation, after many tests. But in Dr.Wallace's book he explains how it DOES effect your G.I. tract!! He also talks about how there are about 600,000 Dr. in practice, to which only about 40,000 are well versed in Lupus!! Everyone's Lupus is different because all of our immune systems work in different ways, so no two Lupus patients will have the same stuff going on. We are complex patients and you have to be your own advocate for your health. If you don't like the doctor you're seeing and he/her are giving you the diagnosis of Depression, yep, you guessed it, depression can be a result of the Lupus and not knowing what's going on with our bodies and I went through a deep, DEEP depression when I was first going through this. It tooks YEARS before it showed up in my bloodwork. Besides the Positve Anti SM antibody. And because Insurance Co.'s don't like to cover Lupus patients, it's best to try to keep it out of your medical charts. My Rheumie puts it down as UMCTD, and Psoriatic Arthritis, which is another thing that came along the course of the happy road from Lupus. BUt it's all a state of mind in my opinion, you have to take it one day at a time and DON't GET YOURSELF STRESSED OUT!! That only makes it worse! I have Fibromyalgia, it was my first diagnosis when getting some one to listen to me. I had to push my Primary, you know your body, and you know when something isn't right. If they blow you off, FIRE THEM and find another doctor. Remember, THEY are working for you!!!! Keep going until you find one that will treat your symptoms (despite the bloodwork results, because most of the time, you have lupus for a number of years before it comes out of hiding. ) Okay, I've said a lot here I hope I helped in some small way as we all travel this lonely road together. You definately find out who your friends are when it comes down to it!! I have some helpful links I thought you might be interested in having:
http://www.anylabtestnow.com/Tests/productid/2829.aspx

Here's another one, it's for the ICD codes that they put on your lab test paper that you can look up online for free! Here's the link for that:
http://icd9cm.chrisendres.com/icd9cm/

http://couldihavelupus.gov/contents.php

http://cure4lupus.org/information/lupus_glossary_terms.htm#thrombosis

I also have documentation that I found online that is very useful too. But I'd have to send it to your email address. It's worth a look at! The best thing I've found out is to search the internet and DON'T go to unreputable sites, go to stuff that is from the government (it will have the ending of .gov) and or like the Mayo Clinic website, all informative stuff. The better educated you are about it, the easier it becomes to not feel so freakin' lonely on this subject, believe me!!! I'll check in later to see if you've read my message! Thanks and hope this info helps not only YOU, but others as well! Your lupie friend, Kim ~

[Alex]

Hi Kiara,
Sorry to hear you have SLE.
I myself do not, however my son was diagnosed aged 9 with ANA and dsDNA negative Lupus. He is now 14 and has just had a course of Cyclophosphamide and Rituximub (a form of chemo-therapy). He has been ill since a baby, however nobody believed he had lupus even though i suspected it, my mum and aunt both had it and i recognised the signs.
He was missed as he was male and because of his young age, first signs about 6 months of age.
Although he has been ill for many years with numerous infections and hospital stays, he seems to have been infection free since this treatment three months ago. His lupus has affected his kidneys which are badly damaged (DPGN ). As with you, there are days when he just cant get out of bed and wants to sleep, he too is very sun-sensitive and the facial rash can be really nasty. He has the sickness, joint pains and all the other bits too. Plus more unusually three lots of chickenpox complicated by pneumonia. Sometimes people with ANA negative lupus evolve into ANA positive within time. However, he has been persistently negative for 5 years now. Those with ANA negative lupus usually have positive Ro and La by ENA, this would account for your sun-sensitivity. Try using sun-sense ultra sun block, it is very effective.
Please believe there is hope as even with this serious situation he appears to have turned the corner. He will always be on meds..Steroids, Hydroxychloroquine, Mycophenolate,Phosphate Sandoz and numerous others, aside of this he is a normal 14 year old. There will be further problems as the Mycophenolate is an immune-suppressant and will leave him vunerable to infections, he is very upbeat and he deals amazingly well with his illness, he brings joy to me everyday. On the face of it i am the one who frets rather than him, his reply to everything is "just chill-out mum", as he so often says worrying will change nothing and he has to live for today and live his life to the full.
I wish you all the luck, you are a beautiful young girl and i hope that this disease burns itself out as it does for many.. Good luck..be positive it really does help... Alex

[Danielle McNeil]

HI KIARA, YES I HAVE BEEN DIAGNOSED WITH A NEGATIVE ANA! MINE HAS BEEN POSITIVE AT TIMES AND NEGATIVE AT TIMES. IT IS SO STRANGE! I HAVE BEEN DIAGNOSED SINCE 1998. NOT HAVING MUCH LUCK WITH MY HEALTH LATELY. I SURE HOPE YOU ARE GETTING SOME RELEIF! IF THERE IS ANYTHING I CAN HELP YOU WITH, I'D LOVE TOO! HAVE A GOOD DAY!
DANIELLE

[Carla Giacoio]

I was told in 1992 that ANA was not the be-all to end-all test for lupus. there is no blood tests for lupus; there are 11 classic symptoms, one of those 11 being a positive ANA- and unless the rules have changed, if you have 4 of them, you are diagnosed with lupus. I had almost every single one, and a positive ANA.

I think it's ridiculous that if your ANA goes back to negative they try to say you don't have lupus anymore. Remission, people! Doctors are so frustrating sometimes. I wish I could only go to doctors that have ever been seriously ill.

[Shelly Binkley]

Yes! However I had medical records (tests) showing that I had positive ANA and this helped. You can get a "false" negative I have heard from several doctors and on-line too.