Positive then negative ANA

[1TeiaMarie]

Hi, has anyone else had a positive Ana then a negative Ana ?! My regular dr did blood work an said I had a positive Ana and they were positive I had lupus sle then I got sent to a rheumatologist that did all the blood work an said my Ana is normal (does this mean all my meds are working)they checked everything an all is normal (but I'm on all this medicine) he is now trying to say I have fibromyalgia, even tho I have all the systems of lupus even the butterfly rash! Is this just me! Or does fibromyalgia feel this bad an have redness across the cheeks an nose!

[Leecylou]

I've had positive ana and dsDNA for many years. Although they are now negative yet professor D'Cruz is of the opinion along with the other two Drs I've seen at guys that I have probable and most like lupus and that because it's negative at the moment it doesn't mean I don't have it as it's been positive in the past. I've also been diagnosed with fibromyalgia about 15 years ago. My daughter and my cousin have both been told this month their bloods are showing positive ana from bloods tested at their gps. It's difficult to know if the meds make the bloods show not positive at the time or whether they are fluctuating. Hopefully your doctor can give you a better answer. Fibromyalgia does leave you exhausted and in pain. I also have an under active thyroid which can also make you exhausted. Might be worth getting that checked too. Take care LeccyLou xx

[LupusAdmin3 LUPUS UK]

Hi 1TeiaMarie,

The symptoms which you have described do sound lupus like, although fibromyalgia can cause similar symptoms. According to the Lupus Foundation of America, it is said that fibromyalgia affects about 30 percent of people with lupus, so it could be possible for you to have lupus with fibromyalgia overlap.

Here's our factsheet 'Lupus and Associated Conditions' which maybe helpful - lupusuk.org.uk/images/pdf/1...

I have also found this article on the Lupus Foundation of America's website which may be helpful to you too - lupus.org/answers/entry/pai...

Best wishes,

Hayley

LUPUS UK

[1TeiaMarie in reply to LupusAdmin3]

Thank you for all the information! I have been Googleing everything, it was just that the moment my dr seen me he said fibromyalgia even with a positive Ana an he wanted his own blood work that came back negative Ana! I was told you never have a positive Ana an not have lupus is that true? I also am the sun bothers me an i get really red an my eyes burn, I didn't know fibromyalgia made your joints hurt I thought it was a muscle problem (I have that too) but a lot of joint pain! My dr had just acted like he was trying to get rid of me he didn't talk to me or ask how I felt just had me stand an he poked on my neck,shoulders, back, hips, wrists, ankles an said I thank its fibromyalgia come back in 6weeks!

[Freckle1000]

Recently i was ANA negative but was in the middle of a SLE flare nonetheless. A biopsy of an inflamed bit of me proved it was lupus. (Try googleing - sero-negative lupus,.... i think?)

Ive also been diagnosed with Fibromyalgia and

believe your'e right. Fibromyalgia causes muscle, not joint pain.

Profound apologies in advance but i'm a bit hyper - deranged about this issue. (See below rant)

I see from a lot of posts - that people who seem 'to me' to be having a lupus flare are too easily getting fobbed off as suffering a fibromyalgia attack without appropriate lupus follow up.

This happened to me recently and it did not end well.

I really think its an insidious trend amoungst Rhuematologists at the moment.

Given that fibromyalgia can't actually harm you and their advice as to what to do about it is often limited, make it crystal clear to your Drs that you want them to concentrate on the lupus aspect 'only'.

All the best. : ]

[Diagnosed2012]

My blood test results are not always positive. Even when I've had a flare and ended up in hospital. A rheumy, who I only ever saw once and who hadn't read my notes, rather dismissively said I had fibromylagia. I assumed this was on top of the lupus. She sent me away for physio. I felt sorry for the physio. She was under the impression I just had fibromylagia, and knew nothing about my other symptoms until I told her....and showed her. My skin was in a bad state. I said to her I'd understand if she preferred not to touch me. She gave me some useful exercises and did manipulate my joints which gave me two to three days relief at most. At my next clinic appointment, I saw two different rheumys who did go through my notes. They were surprised at fibromylagia being mentioned. And instead started me on depomedrol injections. These give me six weeks of relief. I know lupus is difficult to diagnose. And it can be difficult for clinicians. Sometimes, for us patients, it's a case of tolerating the symptoms AND tolerating the shoulder-shrugging, indecisive apologetic clinicians.

[1TeiaMarie in reply to Diagnosed2012]

Yes at my first visit they dr asked me had I see a therapist (uh no between my grandmother passing for als,6 months later my aunt getting killed in a car accident, an 3 months after that my3/4 year old was diagnosed with leukemia her making it through that then having to move in with my dad to help him an him having a heart attach out of the blue!! All in the past 5 years I need the Xanax an the Wellbutrin- I'm not crazy I just have had a crappie 5 years) but he didn't want to hear any of that! An he went on to tell me he don't thank lupus ( like he don't even want to look in to it) then all my test an blood work came back normal!! I thank it's crazy all my joints hurt,arms bones, migraines, teeth hurting, tired all the time ( sleep don't help), and my hair is falling out, nothing tastes good so I haven't been eating but 1small meal a day, tummy hurting, in and out of the bathroom most time for different things! I know I was ranting I'm sorry the dr just made me mad he wouldn't listen to me told me to be quite said he didn't know me an wouldn't answer any questions now I have to waste 5 weeks now to see him!! Hoping when he looks at all my past anas an my x-rays he will say what I already believe it is (lupus) so maybe I have fibromyalgia too what ever just want him to pay attention!! Thanks for listening!!

[Freckle1000 in reply to 1TeiaMarie]

It sounds like you've got every good reason - one hundred times over to have a megolithic rant. You've been through a hell of a lot of trauma and then some. I'm really sorry all this has happened and 'is still happening to you'.

Unfortunately Rheumatologists equate trauma with fibromyalgia.

My advice. Next time you see him, take a proffessional medical advocate or extremely eloquent friend with you to offer support and communication back up. Dont mention any of the recent horrors you've been through - keep it strictly lupus business.

I've actually been known to take some sedatives before seeing Drs. to try and avoid them being distracted by my anxiety state - in hope of steering them away from their fibromyalgia obsessions and fixations. Praps not a good strategy. There must be a better way !

Also, if you can, double book? Have another specialist up your sleeve if this one turns out to be a total dud.

There's no shame in having fibromyalgia, but doctors using it as an excuse not to do their broader job is discrimination against you because of your emotional state.

'Why' questions are a good assertive ( & sometimes agressive ) technique. eg. Why are you distracted by fibromyalgia when the reason I'm here is Lupus? Why dont we have another go at commumicating, we seem to have strayed from the reason I'm here. Or - a more agressive version: Why do you think its ok not to try and listen and find an answer because Im upset?

Why aren't you tending to my positive ANAs. and the possibility of Lupus?

Why are you not considering sero - negative Lupus?

Why haven't you been able to read my medical history before I came in here?

etc etc. You can do all this in a joking friendly manner, but the nasty questions are still been asked.

I know its hard to do when you're enraged & utterly discombobulated. I find it hard to string two words together with strong emotions simmering.

More importantly &

better still, do everything you can to get your mind off it all until its time to deal with these 'people'

Hoping you can find a mellow space and feel better soon.

x.

ps. The odd pop of a xanax is good. Get your GP to help with that !

[1TeiaMarie in reply to Freckle1000]

Thanks so much for everything,I will try meds before hand this time! Everyone had told me this dr was like this all the time, I just thought I would give him a try! That first try cost me $2,400.00!! An $75.00 every time after not counting if he does more test! He told me that if I had lupus( but I don't think you do) You will have to have a biopsy of your lungs,kidney, and brain an he would check everything else!!-I thought that was a little overboard??i didn't think they would check all that in less somethings we're giving me problems!?!?!

[Freckle1000]

Sorry. Gunna be a bit more deranged & emotive in this post....

Just my jaded opinion - but

This Doctor sounds like a true bully. Perhaps even apallingly manipulative and lazy - to try and frighten you off getting a propper broad investigation ? (Possibly he doesn't actually know how to go about it)

Claiming invasive biopsies are the only way you can get a Lupus diagnosis seems a bit warped.

There is absolutely no way you would have to have all those biopsies unless you were showing significant problems in those areas.

With good medical care, kidney probems are detected via urine & blood tests. You would only have a kidney biopsy if these tests showed there was a reasonable chance of a problem.

I'm not an expert in the other areas, but i would think you would have to be near comatosed before any Doctor would risk a brain biopsy, and they are only used if they can't figure out what is actually causing the neurological probem.

I think? Scans cover lung problems?

You'd have to ask your GP, or a much much wiser - pathology savy person than me on this site - but I think ? .... possibly ? a broader range of blood tests coupled with observations of symptoms could give you a better idea about wether a lupus diagnosis is accurate ?

Having blathered on about

all this, I hope those meds ultimately do the trick for you and you can get some resolution.

You're an incredibly brave woman !