lupus tests positive but unusual symptoms

Hello and thank you in advance for answering my question.  Recently I went to a rheumatologist because I was feeling ill (low grade fever and achy) frequently and about one year and 1/2 ago had a positive ANA and mildly low complements-I also had something a bit high which had to do with blood clotting?. I also have migraine headaches at least every other day and am on preventative meds, have frequent stomach issues and have some numbness in one arm and white toes (particularly with bad migraines.)  I have no butterfly rashes (just sometimes get eczema)The doctor ran some tests and said my Anti-DNA was positive-he did not test ANA again because a recent test showed positive results.  He said he wants to test this again in another month before giving meds-just in case it was a false positive.  Does this mean I definitly have lupus?  Also how often is the Anti-DNA a false positive?  Is it common for people with lupus to have severe migraines?  thank you for your time.

[Sherri90049]

I've had lupus for 15 years. Luckily it's been fairly mild. No organ involvement. I don't know about the migraine issue. I haven't had any or butterfly rashes either. (but I do get photosensitive) Judging from what you've said about your symptoms and lab tests, I think it's pretty likely that you do have lupus. But it's good that your doctor is going to recheck. In case you do, I have to tell you that the best improvement I ever had was when I changed my diet. (eliminated wheat and sugar, am working on dairy now) :-) Lupus is a very manageable condition so if you do have it, don't worry! Best wishes!

[ktmom]

Thank you Sherri-I am photosensitive as well-that definitley brings on the headaches.  I do avoid wheat, dairy and sugar-and it does help alot. I so appreciate your advice and words of encouragement.

[Veree77]

Hello! I've been diagnosed with lups for the last 4 years. Yes you can most certainly have migranes (migraines). I've actually developed them in the last year. I don not have the butterfly rash either, but I am photosensitive and I too suffer with Raynauds phenonmom. Lupus is mangeable and I'm currently on 400mg of Plaquenil daily.

Hope that helps

[aris44]

Hi everyone.  I am just reading this thread b/c it's pretty similar to my situation although I had a negative ANA but positive dsDNA.  As of now, everybody is telling me that it is lab error.  I will see if they will re-run it when I go to the rheumatologist next month.  I do have Raynauds, joint swelling/pain (sometimes), sun sensitivity...but most of my problems are neurological.  They have ruled out MS and the neurologist told me that since my MRI was normal it wouldn't be CNS lupus either.  Well, I'm telling you...it's something!!  Right now, I've had tremors, extreme fatigue, confusion and headaches off and on for the past week.

Anyway, sorry I went off on a tangent..can you tell I'm frustrated!?  This is what I really wanted to ask in relation to this post:

Why no wheat, dairy, or sugar??  Those are my 3 favorite things!

Just wondered in case this is Lupus I could at least try cutting those things out...?

[ktmom]

thank you for all your helpful comments.  To the last person who sent a message.  Wheat, Dairy and many other foods affect me by giving me severe migraines and stomach issues (they actually thought I had Celiac-but test was neg.) I have heard these foods cause inflamation (inflammation).  Is having a anti-DNA false positive common?  The doctor thought that was a possibility with me as well.  I wish the best of luck to you-I know it is frustrating to not have a diagnosis.  I was also wondering for those diagnosed.  Are you able to continue with work?  I am wondering because I have two young children and am a teacher of young children. I have found it really hard to work because of my symptoms-but of course i am not being medicated as of yet.  Just wondering what your experience has been?  also can you have photosensitivity without a rash. I just get dizzy and nausea in the sun and sometimes body aches.  Thanks for your help/advice.  I dont' know anyone with this disease so your feedback is very helpful.

[karajo]

According to the Lupus Book by Dr. Wallace.  The anti-DsDNA is rarely ever positive in people who do not have SLE.  I hear of so many people given the run-around with a dx.  Then others who get one fairly quickly.  While others will go ahead and try medicines to see if it will help.  I'm so sorry you one of the many who just get the run-around.  

Spend time in the sun prior to your next autoimmune labs.  It will make your ANA go really high (if you have lupus) and cause them to really take notice.  

Take care of yourself, get the rest you need.  Stay away from particularly soft drinks.  I too think sugar contributes to the inflamation (inflammation).

Slippery Elm (herb) has helped me with the irritable bowel issues.  If I can stay away from medicine, I do.  

[ktmom]

thank you so much-your advice is very useful.  I just ordered that book you wrote about.  I will try the slippery elm! And thank you for running this forum-hearing from other people who have this disease or are struggling to get a diagnosis is very helpful and comforting.

[aris44]

Hi, thanks for answering my question.  I feel like you and I are in a similar boat.  Since I've never had a positive ANA I'm getting nowhere with the Dr's.  I feel your pain about being able to go back to work.  I have become a stay at home mom and wouldn't be able to also hold a job...can hardly take care of my son some days.  We contemplate having others, if I were to continue feeling like this I couldn't.  I imagine that if you/we were properly medicated it would be a whole different, much more tolerable, world.  This is why I am pushing so hard to get a diagnosis.  Good luck with everything.