my drs all agree I have lupus symptoms and cant seem to find an answer. The blood tests all came back negative. For years I have had joint and muscle pain which over the past year has become very difficult to cope with especially around ovulation. The fatigue is debilitating. I have a red rash across my cheeks and nose which is raised in places . I also have white lumps along jaw line which itch (not a lupus symptom). I have red knuckles and red patches between the joints of my fingers (esp on the skin under the nail) and suffer from raynauds. I get mouth ulcers frequently. I also have broken veins on my chest and face that look like red dots. They did consider scleroderma or crest as I have a couple of lumps on my fingers too. They said these didnt look calcium type deposits though. Has anyone else had so may symptoms but without a postive blood test? I am at a loss for what to do next. I will have blood tests in november for dermamyolitis (sp?) a musle wasting disease I think, although I have no signs I am aware of of muscle wasting.
I really would appreciate feed back from anyone (although I know your not drs!) I have also had quite considerable hair loss but thiss was during pregnancy and for the year after at least. I did breast feed for the whole year though.
Thanks in advance for any input/ moral support :-)
hello, I am definately no expert. But you weren't taking any anti inflammatory meds or steroids before they tested you were ya? I have been doing some checking into this and talking to others and they can affect the tests. My first Lupus test was Positive. The doctor then put me on the anti inflams and sent me to the Ruemy. When I finally got in to see her the tests were negative. I recently asked for more tests. I am at the mercy of the Veterans Administration and prior to giving me the new blood tests the doctor gave me steroids and anti inflams again....when I realized what I found online I immediately stopped the meds until after the tests.I go in for the week after next.. I'm not positive, but that IS what I read on a website for the ANA test for Lupus concerning the steroids and another member here said the anti inflams can affect the sed rate on the blood tests. Just thought I'd share what I had picked up. Best of luck to you. I know you must be suffering. Hugs Amy
One very important thing to remember is that blood tests are only one (two?) of several (11) diagnostic criteria for Lupus, of which you only need 4 (you have more than 4). While many doctors wait to give a firm diagnosis until they see a positive test, it's not a requirement. Several people have negative blood tests for years (me, for example).
As for symptoms, I am definitely no doc, but... I would think about discoid lupus for the red dots/patches. If the white spots on your jaw line are bumpy, that could be discoid, too. My doc treated my red & white bumps/sores with an antibiotic and it helped, but didn't cure. That's how she knew it was from the lupus and not something else like really bad, funky acne or something (that, and it wasn't helped by birth control). I also have many lumps under the skin. I've been told everything from cancer to calcium cysts, but they're (almost) all undiagnosed, so I can't really tell you if its lupus or not....
oh, also, make sure they check for Fibromyalgia for your muscle pain. It tends to go along with Lupus, but is treated differently.
Hi Kelka -
I am not a doc, either (though, I swear, some of us COULD be!!) however, I suffered for many years with the same problem. As someone noted before, a positive ANA does not CONFIRM dx, nor does a negative ANA rule diagnosis out. However, there are few doctors who will go forward with Dx without a positive ANA. Why this is? I dont know, because it is a known scientific fact that one can have lupus and still carry a neg ANA. I am one of the fortunate ones who have been Dxd and still do not have a positive ANA. However, my other blood work is abnormal, and I have the majority of the other 11 criteria.
I do believe that docs are coming around to accepting that there are patients who have this disease but do not show the antibodies to it as yet (ANA). Their assumption is that at some point down the road, the ANA WILL show up to be positive, or that it has been in the past but was missed.
Someone also noted how the ANA can flutualte. For instance, it is not uncommon for someone to hafve a pos test one month, a borderline another month, and a negative ANA another month. The changes can be caused by many things such as medication (as mentioned above), other illnesses/infections, and/or disease activity. This lst reason - disease activity - is a tricky one, as your ANA test does not alwyas reflect how you feel either. Someone who is in a major flare may have a low positive or neg test, and someone who feels they are symptom-free could have a very high ANA. There is no rhyme or reason to it.
This is one of the reasons a lupus Dx is so difficult. Most docs (as they are ridiculously undereducated in lupus and other rheumatic diseases) feel if the ANA is negative, there can be no lupus. I have had that said to me by TOO many docs to count - even though I had many of the other criteria for Dx. More educated docs are now seeing that this is not necessarily so, and will begin treating someone without the pos ANA. Oftentimes, they will call it "UCTD - undifferentialted connective tissue disease", "Mixed connective tissue disease MCTD", pre-lupus, or seronegative lupus. These terms are becoming more and more popular as doctors are becoming more aware of different progressions of disease in different people. This is good news for those of us whose blood isnt willing to cooperate during test time!!
As a matter of fact, my current rheumie is someone I saw a few years back looking for answers (eight - year ordeal for me...boo). At that time, he stated he KNEW something was going on, by my exam and blood work, but with a negaive ANA, there was not much he could do about it. Fast forward a couple of years and I was referred to him again, after my new GP said I had lupus, despite the negative ANA. THIS time when I saw him, he stated that there are a small portion of lupus patients whose ANA does not show up positvie before the sympotoms do, but as the disesae pregresses, so does the test begin to show positive.
So, in summary, (can you tell this is a very important subject for me?) it is important to find a rheumie who is up on modern advaces in autoimmune diseases, and one that would be willing to treat you, despite a negaive ANA. Even if they dont call it "lupus" at first, and call it MCTD,UCTD, pre-lupus, etc - what matters is that you get treated!! This disease is one whereby the earllier the treatment the better chances you have to keep it under control. I, for one, have gone YEARS without treatment, and now have organ involvement...Im not resentful, though, but grateful I finally found a couple of doctors who will think outside of the box...Also, this is why this subject is so important to me, and why I try to tell as many as I can that you CAN be treated before official or partial Dx...
Within days of being treated as a lupus patient, I was up and out of bed, with dramatically less pain, fatigue, swelling, brain fog, etc. Now granted, the meds for lupus are lousy....plaquenil is fine, but takes a long time to work. But, prednisone is toxic and causes many long-term problems, and the other choices are DMARDS, which are another type of immunosuppressants or chemo.
I hope you find a good doc in your area - usually any university hospital will know more about autoimmune diseases than others, but , ask around. Good luck in your search for Dx and wellness...
Also, just wanted to note: There are MANY different forms/types of rashes seen in lupus, besides the mylar (butterfly) rash, and the discoid rash. You can see all kinds of photos/examples of them on (I think?) Mayo? Or you can just google "types lupus rash" and you can see, there are a ton of dfferent manifestation of it. They range from tiny little bumps to mottled, lacy skin (livedo reticularis) to larger pustules...
Again, I hope all this helped...good luck!
thankyou so much for all your help and advice. My hospital is a university hospital but my consultant there is a dernatologist. They seem very keen to get to the bottom of it though, as does my g.p. One thing I havnt been able to find anywhere is any infomation about the length of a flare. Mine seem very cyclic and hormonal. The skin problems worsen in sun but can also worsen hormonally. I also have very bad reactions i.e. sickness, brain fog, vertigo and muscle weakness with flourescent lights. Does anyone else have this? I havnt seen anything about this relating to lupus. I also forgot to add that my symptoms worsened during pregnancy (esp. hair loss) and for the year after. I think this can just be a pregnancy thing though.
I am very worried about meds, esp those you mentioned lauri, as 3 yrs ago I was diagnosed with bipolar due to depression and mood swings in genera,l and they were horrific and almost as dibilitating as the illness aswell as the lupus symptoms I was getting. Thankfully I no longer take them as they didnt work anyway. It did leave me with an extreme distrust of drs and the overwelming feeling that they dont have a clue what they are doing!
I will go back armed with infomation and questions but, unfortunatly, as ever, my polite and unassertive self. good luck to you all. Youve been very helpful.
It is possible to have ANA negative Lupus. It is rare, but it does happen. My ANA is not always elevated.....but I have many other symptoms like you. Blood test are only part of the diagnosis. You have to have 11 symptoms listed to really be diagnosed and only 1 or 2 are blood related.
Well you only have to have 4 of the 11 symptoms to be diagnois. My I have seen my Rheumy three times he order 26 tubes of blood and X-Ray's and I have my Diagnois of Lupus it took three visit's and I'm already on meds he is very good and he looks deep ito the problem and he listen to me and my family on what has been going on with me. I'm very luckiy to have a diagnois i know some people it took yrs to get one. Well Good Luck Kelka.
Well, from reading all your responses, we are all in the same boat. I do not think anyone ever has all the positives on their tests and they have lupus. My rheumy just said to me 2 days ago...that the tests used today are not very good..but it is all they got. He is having more blood taken on monday and will be sending it to a different larger lab in CA. He said that even the "normal" levels vary so much from lab to lab. It is crazy. I just wish the people who came up with these levels had to walk a day in our shoes...on those days it does not hurt to walk. It is not rare to have a negative ANA and still have lupus. I read an article that this happens espeically if you go to the doc feeling decent. I was like diva2008...I have 18 tubes of blood drawn and I finally got the diagnois of lupus 2 days ago. This is definitely a marathon, not a sprint. If you like your dr stick with them, if not find another one. I wish you all the luck in the world. If you ever need to talk, just let me know...I am here to listen.
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