How can I guarantee I have lupus?

[fastermatt]

So far I have failed all of the Anti DNA tests. My primary ran a bunch of tests but he is sending me to a rheumatologist to make it official. I will be seen in two weeks and my symptoms so far are massive fatigue, small joint pain, itching all over, bloody nose for two months, really tired and mostly in constant pain. But I don’t have a rash on my face and it seems like that’s almost mandatory. If I don’t have Lupus I can’t imagine what else it may be. Any thoughts???

[whisperit]

Yes, I am afraid the entrance requirements for the lupus qualification are exacting. I myself have failed on numerous occasions, despite managing to work up a ANA test positive at 1:1280. I keep failing at that elusive butterfly rash test.

Instead, I make do with the rather disappointing UCTD. (To my horror, my rheumy has even hinted that I may be further downgraded to "Fibromyalgia with significant auto-immune features" )

I am teasing, fastermatt. The serious point is that - as you realise - lots of us spend years in a kind of diagnostic limbo. Our symptoms are extremely diverse and rarely seem to fall into the neat categories that would help our physicians place us firmly into a well defined disease category.

I guess the important thing is to make sure you are getting an effective treatment? As you know, a proportion of AI diseases fail to give a positive ANA result, so that might still be your bag. All I can suggest is that you ask some very pointed questions of your physicians to make sure you don't get left with vagueness surrounding your treatment as well as diagnosis - "What is your explanation for symptom X? And (most importantly) what is your plan for eliminating it?"

In any case, it does sound from what you describe that the rheumatology referral is the best step right now. Hope it goes well.

[misty14 in reply to whisperit]

Oh boy Whisperit

That's a new diagnosis, Fibro with auto- immune features!. Not heard that one!. How can that be when there two very different / distinct medical conditions!. No wonder your appt this week is crucial for you. You might be needing a new Rheumy. Best of luck. x

[whisperit in reply to misty14]

Thanks. I know! I was aghast when he said that. I said that surely it was much more likely that my symptoms of extreme fatigue - but no pain - were due to the rapid steroid taper rather than my suddenly developing FM on top of my AI condition, but he wasn't having it. Today will be a real test of his credibility as far as I am concerned! x

[Bebe76]

Not everyone with lupus will have the butterfly rash - I think the number is 50%. Hopefully your rheumatologist can sort things out and get you on the path to feeling better.

[CRYSTAL11]

I have never had a rash. But still have Lupus Plus sjogrens fibromyalgia and Addisions. It always seem to make such a difference to the doctors if they can say yes it's Lupus or whatever it is. It always seems to validate what we are saying

[Treetop33]

I never had a rash either, but still got diagnosed with Lupus. I'm not sure if the meds are significantly different in many autoimmune conditions.

[bluetit42]

i was told i had lupus. went mad. asked for a second opinion. they said i had lupus. six/seven years later after treatment for SLE the original doc said i don't think you had lupus anyway. asked for a second opinion at st thomas's again. they say i don't have lupus either.

i thought lupus was for life or is there politics in this

[Bacardibabe76]

Hi, I don't have anti dsdna, but I do have other antibodies, so just because that is negative doesn't mean you don't have it.

I do get the Malar rash but it isn't permanent, sometimes it's a sore stinging redness that looks like I've been burnt. Again you don't have to have the malar rash to be diagnosed.

Everyone's lupus is different. Good luck x

[Wenwen]

Could it be something else such as Myositis or polymaositis or dermatomysotis?

[rswx]

In a similar situation to you, all gp tests were fine, and hand xrays and have had 1st rheumatology appt last month where they did more specific blood tests. I have joint pain and swelling in finger joints on and off, chest pain, bad fatigue, stabbing pains all over my body randomly, tingling in hands and feet sometimes, constant sore voice, "brain fog". But I don't have any skin issues or rashes. I think if the lupus blood tests come back normal they will say UCTD or fibromyalgia.

[Fennella02 in reply to rswx]

Uctd and Fibro are very different conditions requiring different medications and a different approach.

[rswx in reply to Fennella02]

Yeah

[777dove in reply to rswx]

MANY of your symptoms are what I experience too. I have been dx'd with Sjogrens Syndrome which is a very serious AI disease. One DR said I have FM, too, but I do not agree.

However, so many people with one AI have multiple overlapping diseases. I also have Raynauds, peripheral neuropathy, one horrible bout of eosiniphillic gastroenteritis in 1990, progressive scoliosis, and right now lung involvement (dry hacking painful cough for two months). Everything flares--I call it the BEAST. It just goes on and on.

[rswx in reply to 777dove]

Yeah, i'm aware everything overlaps. When i feel ill and in pain, everything gets worse at once. I was only referred to rheumatology about my joint pain, but she was so interested in everything else especially my chest pain. Obviously trying to link everything together! I'ce only had health problems/pain since I was 17 though, nearly 20 now. Hope you are doing well.

[777dove in reply to rswx]

Thanks. I wish you all the best.

[fastermatt]

Thank you all for your help and humor! It’s a little weird to be dealing with a ghost disease and not having anyone around that really understands it. Thank you for being a really caring community and thank you for helping me understand how difficult this journey can be and that I’m not alone. Thanks y’all!!

[kazmac45]

I agree with IAmAnElf - I felt my rheumatologist last week was basically trying to 'prove' it's not Lupus that I have.

I have many symptoms, including my face flaring up, but it's not the 'typical' rash, my GP pointed out, so probably would discount that too.

Many people don't have 'typical' symptoms of this and lots of other illnesses, so all we can do is stay strong, keep persevering and push for answers or re-referrals or second opinions xx

[kazmac45]

Yep - GP is awaiting my outstanding skin biopsy result and the bloods that last week's rheumatologist did, then likely re-referring me to a different rheumatologist for a second opinion.

It seems such a fight for everyone, doesn't it? 🙁

[Hidden]

unfortuantly it can be a very long route to get diagnosed with lupus, so far its been 2 years for me and i still havent been diagnosed but conatantly get checked every 3 month by my rhumtologist for lupus. But like yourself all i have positive is a very high ana but normal lupus blood tests... I have alot of symptoms which indicate lupus but its extremely hard (I think) to get a diagnosis.

[grannypat68 in reply to Hidden]

Have been 'symptomatic but not diagnostic' for over three years now!! Told unlikely symptoms will get worse 'at my age' - but they are!! It's like a lot of us are constantly swimming against the tide!! Oh for a GP/Rheumy with a sympathetic ear, with the time and inclination to look 'outside the box' when it comes to the multitude of AI disorders.

Love and hugs to all in similar position and thanks to those more knowledgable friends who offer such helpful advice when we have nowhere else to turn.

[Paul_Howard Partner LUPUS UK]

HI fastermatt ,

The classic lupus malar 'butterfly' rash on the face actually only occurs in around one-third to one-half of people with SLE, so not having the rash should certainly not rule out the possibility of lupus. Lupus is a very varied condition which presents differently in everyone - this can be one reason why it is so difficult to diagnose.

You mention that you've had negative anti-DNA antibody results. Do you know whether any other results (such as ANA) were positive?

I'm afraid we are not medically trained here and we cannot comment about what the cause of your symptoms may be. If you are unsatisfied with the diagnosis and treatment plan set out by the rheumatologist, you can always request a second opinion. If you decide you do want to do this, please get in touch and let me know what area you live in. I can provide you with information about any lupus specialists we may know nearby.

[fastermatt]

I mean i am positive for the ana tiger test speckled.