Im curious, does anyone know if you can test negative for syphilis and still have lupus? The reason I ask is I have had two positive ANA's but I know the one of the routine tests in pregnancy is Syphilis which i tested negative for. All my children were born prior to symptoms and positive tests however and not really sure how these tests work, I am reading they can fluctuate so would it be reasonable to assume that the syphilis test could turn out negative even if the person has lupus?
Umm.... I'm not sure what the connection to Syphilis and Lupus is in your mind. I've never heard of it and I know for a fact that I do NOT have Syphilis. I would say yes, you can be Syp neg and be positive for Lupus. I'd say most of us are that way. Syphilis is an STD, not an autoimmune disorder.
I think end stage Syphilis can make you a bit crazy or even blind, but I don't think there is any link to Lupus.
I think I read somewhere that you can have a false positive VDRL at times with lupus. But it has nothing to do with having the disease itself. I think some tests are so fragile that one inflammation can cause a reaction in another even in the absence of the illness. It would equate with having a false positive in say a pregnancy test and not being pregnant. I will try to see where I read that and if I find the source will ask if I can share. Hope that helps. It is my understanding that neither illness would have any bearing on the other though.
I did a search on false positive VDRL in Lupus and lots of info comes up. I think this is a common occurance in inflammatory conditions as it also mentioned this can happen in active mono as well.
Last edited by goldyfm; 10-29-2009 at 09:57 AM.
Reason: additional comment
Lorraine I've also read that syphilis test can come back as FALSE POSITIVE in people with lupus &/or antiphospholipid syndrome (APS). Have you seen the "stickies" (permanent info posts), at the top of the thread list? You'll find useful info in them in how lupus & APS are diagnosed.
If it's really your two positive ANA tests you're worried about: ANA isn't specific, meaning it may be positive in a number of conditions (not just lupus). Thus I picture ANA as a clue, not an answer; and more is needed to give it meaning. e.g., anomalies on your standard bloodwork; results of more specific tests (those used in lupus, or in all the OTHER conditions in which ANA is seen); and actual symptoms that point to a "real problem".
I only say "real problem" because sometimes ANA is positive due to lab error. One reads it's a difficult test to run, so the line is probably pretty tiny between "negative" and "very low positive". Also, I've read that ANA is sometimes positive simply due to a passing virus, or just a family tendency.
Did your dr. say anything about the two sets of ANA results? Was any follow-thru done? Do YOU think you need follow-thru? Anyway, hope this helps & that you post more when you can. Bye & best wishes, Vee
Thanks for the information. The reason I asked is because the doctor told me you could test positive for syphilis if you had lupus but that this did not mean you had syphilis, so I was hoping maybe the fact I have had three children and therefore three negative syphilis tests this would perhaps rule out lupus for me. But as I mentioned earlier I had my children before onset of symptoms so it may not have shown anything anyway. I hope I am making sense. The doctor thinks there is significance in the two positive ANA's. I am researching for answers/clues to what it is I have, like most people here I guess.
Brief history. My first positive ANA was approximately nine years ago when I started suffering from a heavy head, complete numbness in my tongue and blackness that would force me to sit or lie down anywhere i could find at the time. This went on for months and when I went to the doctor (different one to now) she said something had come back in my blood indicating lupus but that it was hard to diagnose, took years and to be quite honest I cant really remember the rest of the conversation. I do remember looking up lupus and seeing something about rashes on the face so dismissed it thinking i couldnt possibly have that because i do not get rashes on my face. Eventually the above symptoms disappeared (to this day my tongue has not gone numb) and i forgot about the whole lupus thing.
Fast forward to the October 2008 and my hands started going numb. Due to type of work I was doing, they thought carpal tunnel. Had nerve conduction, nothing. Ultrasound showed no nerve entrapment, however showed minimal synovial thickening in both wrists. I made the decision to leave that job due to the fact that i thought it was some kind of repetitive strain injury and eventually my hands got better though i was left with very mild residual weakness in both hands.
2009 has been a terrible year. Hands numb till about February. April till July I had a severe flu that lasted 4 months with a horrible dry cough that I could not get rid of, 5 courses of antibiotics, ribs that felt broken, was forced to take time off of work, it was pretty terrible. Doctors kept saying virus virus virus. Then in August I got a severe case of Trismus(lockjaw) apparantly from the one remaining wisdom tooth I had in my mouth. There was no apparant infection and tooth was not decayed or impacted and dentist said it was unusual but that it could happen. Then within a couple of weeks of my lockjaw subsiding my hands started going numb again. Geeezzz I am fed up with my self by now. On top of all this I have noticed increasing problems with bladder control, balance issues etc. So off I go to the doctors and she ran some blood and the positive ANA comes up again, this time she explains i have a homogenous and speckled pattern that is sometimes associated with connective tissue disorders autoimmune etc but that it is not specific to any one disease.
Doctor initially suspects MS but as history starts to reveal itself, I realised I have actually been sick on and off for the last ten years with various things and have also put up with some annoying symptoms which i have managed myself because the doctors could never give me any answers. Some of which include recurring sensation of having something stuck in the back of throat (painless) extremely annoying especially at night when you are conscious of every swallow, severe restlessness in my legs where i have to get up because it drives me crazy, severe itching of scalp, (have tried every shampoo on market). Problems with my ankles, knees, wrists, (just thought i had weak joints) In the last five years joint problems have extended to my back and neck (just thought i was getting old, :-), im only 39) Some of the more horrible things have recurring problems with my eyes usually occurs at least every three months or so, worse in summer time, (bloodshot, burning, gritty and painful) pneumonia(3x), chest infections(lost count), gastric disturbances (sometimes quite bad and they thought i had an ulcer) depression, anxiety which is intermittent and chronic tiredness and extreme heat sensitivity. Oh and now i have a wart like thing on the bottom of my foot that started off as a callous two years ago and refuses to budge, have tried everything and it wont go away, just keeps getting bigger. So much for a brief history.
Anyway so now I am looking for answers, Iam starting to think not MS, maybe it is lupus after all or sjogrens or something. I am going back to doctors on tuesday for more tests and have a referral to a neurologist in three months. The question on syphilis was me in the process of gathering info for doc on tuesday and getting my questions ready to ask. Thanks for reading my probably really long post.
Last edited by GuaranaGirl; 10-29-2009 at 04:42 PM.
Lorraine, hi again. On the "sticky" (permanent info at top of thread list), there's a very important point to be drawn from the diagnostic criteria. Lupus is varied, both in intensity & the symptoms it presents with. This is why you'll see that to be Dx'ed with systemic lupus (SLE), you generally must meet 4 of the 11 stated criteria. (But that's a LOT of criteria!) Further, you don't have to meet them all at once, meaning they can happen over time. (And FYI, there are milder forms for which you may meet fewer than 4.)
Now think on what it means to meet 4 of 11. For example, you could have lupus WITHOUT a malar rash. You could have lupus WITHOUT being photosensitive. Etc. It's a wide definition, is what I'm saying.
I'm only a patient (obviously), but I do think seeing a rheumatologist could be a good move. Looking at your list---speckled & homogeneous ANA, rib pain, trouble swallowing, dry eyes, fatigue, digestive problems, urinary problems---as you yourself speculated, one could think of lupus, Sjogrens, and other "close cousins". All would fall in rheumatology.
After decades of ever-worsening & expanding problems, I also thought I had MS because I had such fatigue & tingling. But I never had a malar rash, and ANA was negative. Well, ha, joke was on me! My rashes were a "variant" kind, plus I fell into a very small subset of lupus who stays ANA-negative.
My take is that it makes sense to think BROADLY, and to ALSO see a rheumatologist, if you can. Stay in touch with us, OK? Bye, Vee
P.S. I dumbly saw an amazing number & variety of doctors, over an amazing number of years. But you know much more than I did, from what you write. I'm glad you'll seek help in a savvier way!
Last edited by VeeJ; 10-29-2009 at 06:03 PM.
Thanks for the input, I too have seen many different doctors over the years due mainly to never really thinking much of the ones that I have seen or relocating so my medical history is scattered across various medical centres. Most doctors I saw when I did go put my array of weird symptoms down to a viral infection or anxiety and kind of brushed it off leading me to think I was just being a baby worrying too much over nothing.
As far as being savvy goes, well I think its only because in the last couple of years, like you, my seemingly unrelated episodes of illnesses have compounded and become more obvious to the point they are impacting on my ability to work, live etc and along with the doctor telling me she suspected MS that I was jolted into the reality that there might actually be something wrong and that it was not something I could not deal with on my own. I have been managing symptoms on my own probably for the last 10 years whilst in denial that there was anything really wrong. It wasnt until I started a "history" as suggested by the doctor that I realised how many episodes of various illnesses I have actually had. I always kinda wondered why i would get so sick when everyone just got a cold, I would end up with pnuemonia. , I just thought I had a bad immune system, haha on me too, I was probably kind of right. As far as a diagnosis of lupus or sjogrens its the eyes that got me, there have been times where i have wanted to rip my eyeballs out their sockets they have been so bad and i get really tired of people asking what is wrong with my eyes.
That was when i really started looking at the possibility that this was what i had and I can see that I have many of the criteria for diagnosis listed in the sticky you mentioned. Very interesting. I plan on taking it to the doctors and asking for a referral to a rheumatologist. I think that would be a good move.
thanks for your help, I will keep in touch and let you know how it goes.
Lorraine, my GP & earlier drs. would make oblique remarks, like the one your dr. made, about your ANA patterns not being specific to a particular disease. It's true---but only as far as it goes! A remark like that doesn't convey that there are many *more specific tests* that may be ordered additionally, where ANA is positive, if symptoms warrant. For example---
1. other blood tests that look for specific autoantibodies.
2. skin biopsy with stain tests can help to Dx lupus.
3. for Sjogren's: Dry Schirmer's, Rose Bengal stain test, lip biopsy, and anti-Ro blood test are typical tests (probably there are more).
And those are only some of the possibilities...
Funny (in an awful way), but I said things very much like you've said to your own doctors, like "Something's wrong with my immune system, because I get everything that goes around." In a completely dumb, unknowing way, we're handing our drs. another possible path of inquiry---autoimmunity---when we say things like that! Hang in there and keep at it, OK? All my best, Vee (But I STILL say you're smarter than I was. It took me a lot longer than you, to see my problems as possibly related.)
My mom has MS and a lot of what you described sounds like it. Have you had a CAT scan to check for plaque on the brain? Or a spinal tap? That is finally what they used to dx my Mom. Maybe have them done and have it ruled out so you can focus on other things?
The numbness and vision, bladder.. all of it sounds so much like my mom! She struggled w/ it for years before they finally figured out what it was. They all told her it was in her head. Her brother was dx w/ it before her and then she was. I was about six at the time, I believe. I'm now 34, so I can't remember most of it.
Yes, I am starting to see that now with all the tests they can do so I am going to ask my doctor is if there are any she can do before I get into to see the specialist. I have a neurologist appt in three months but the arthritis foundation thinks I will probably get in to see a rheumatologist a lot quicker than that and they also gave me a list of good ones that specialise in lupus/sjogrens etc.
Hi 2cutekids, my doctor does actually suspect MS and wants me to have an MRI and referred me to a neurologist, I have had a cat scan which showed no tumour etc but she said that was to rule things out as a cat scan will not show MS Lesions but an MRI will/maybe. She ran a course of other blood tests one of which was the ANA which came back positve, and checked for diabetes, and cant remember what else. I think she plans on running more as she got them to take extra blood depending on what came up. So we shall see. Not sure whether I would rather has MS or Lupus, they both sound as bad as one another and seem to be able to cause similar problems.