I began seeing a rheumatologist and many tests were conducted, blood work, urine, and a chest x ray. The doctors secretary called me and told me I tested positive on the ANA and another test, but not for inflammation or rheumatoid arthritis, and that the doctor had some more results to review. I was diagnoses at that initial appointment with myalgia and arthrialgia, which more or less meant muscle pain and joint pain for no justifiable reason. I have a prior diagnosis of thyroid dysfunction, acute renal failure, have suffered from migraine headaches, sensitivity to light, and had recent dizziness, one sided weakness, and falls treated in the ER. The doctor prescribed me meloxicam for the pain/ diagnoses above that first visit.
She calls today an says my double stranded DNA test was fine (12 out of 30), and she doesn’t think I have lupus. She is ordering a heart ultrasound and a lung function test just in case, sent in more refills for the meloxicam, and wants to see me again in September of these other tests show no abnormalities. Help?!!?! I looked up the tests and 97% of lupus patients have positive ANA results, but only up to 50% trigger the double stranded DNA. How could her secretary call me and tell me I have lupus, and then this other test disqualifies me??! Really? My mom has obvious lupus but has never had any positive lab results to prove it. Are these other symptoms really not related? I’m so confused! Need advise!
A positive ANA does NOT diagnose lupus The ANA can be positive for many other reasons than autoimmune disorders. The road to a lupus diagnosis requires a whole bunch more positive labs and there are a multitude of autoantibodies to be tested for in addition to ANA. There are many other reasons for symptoms - allergies, viruses, infections, overuse syndromes, Lyme disease, etc can all cause myalgias Then there are a myriad of other autoimmune disorders such as mixed connective tissue, Sjorgen's, fibromyalgia- each with different treatment protocols . At times it can take quite a bit of detective work on the part of the medical team to determine the underlying cause of an illness- it is not that your myalgias are not justifiable - it is that the medical reason is not yet known. So an initial impression that it is not lupus is actually good news- here is hoping your other tests go well for you also
I went to more rhumys…this all sucks living in pain…i need a better quality of life…stay strong…we are here for you…
Not everyone tests positive for lupus and some that do test positive will test negative at other times. The chances of testing positive for lupus, I was told by a couple of doctors, is only 20%. A third doctor told me that tests are not infallible and that most times it takes good listening skills on the part of the doctor and ruling out other diseases to get an accurate diagnosis. Good luck and gentle hugs to you!
You definitely have an auto immune, Reet is right, blood test aren’t always conclusive. I tested positive Ana, then negative, positive, for two years with primary doc. He finally sent a report to Rheumy who not only took blood but went with my symptoms. Blood work still comes back different. I had a neg anti DNA, went another Rheumy, he thinks I have ra not lupus. My symptoms are that of lupus, I’m sticking with the Rheumy who believes me. Plaquenil! Tried herbal and natural, still follow that diet, but I now take plaquenil! Try to seek someone who will keep record if your symptoms and do blood work every 6 weeks, you have to force yourself on doctors, they think your nuts until you finally find someone who believes you, or the blood work finally shows the correct answers. Best wishes!
Thank you all for your kid words and advise, I have an excellent coworker/ friend/ mentor that has been so supportive. I am so tired of being treated like I’m crazy. I’m in pain ad can’t de with this any more. My psychiatrist yesterday put me in a one month medical leave to deal with more testing and coming to terms with everything. Everyone is so judgemental and who has it worseike it’s a competition( especially my mother) and its about all I can take anymore. I’m hoping this time off helps me to re prioritize what is truly important and feel like a worthwhile person again. She upped all of my anxiety meds exponentially for this first week to help get me even keeled. Thank you all again. She also wants me to find an in person support group. Any suggestions in the Cleveland area?
Good, Hester! I am glad the Psychiatrist is one that understands that your body is not the only thing affected by everything you are going thru. Since you are in Cleveland have you thought about going to the clinic. I know it is THE place to go for heart but surely they have a clinic for autoimmune issues...maybe? I totally understand about the competition thing. I sent the letter about lupus and how many spoons we use for each thing we have to do in a day. I couldn't believe how many people wrote back and said that they got tired too and that it isn't just lupus. Well, I did state at the bottom that there are many people who don't have lupus and this still applies to them but some (one person in particular) has to bring up how many spoons he has to use in a day and that he doesn't think I use that many. Geesh! If you haven't seen this post be sure to look it up on here. I have been criticized by co-workers when I was working and one of the most vocal ended up with fibromyalgia. I was gone by then but I heard about how bad she got and when she was diagnosed finally it dawned on her how critical she had been to me and now she had what I did. She saw me once after all that and was overly friendly and tried to tell me how she understood and I remained cool towards her. Not the nicest thing I ever did and not my usual way but I decided she needed to know how hurtful she had been to me and others and in fact caused trouble for me and others by criticizing us to our bosses and exaggerating things. Believe in yourself and not what others think of you.
Just looked at the Cleveland Clinic main clinic website and there are several rheumatologist that specialize in lupus plus other diseases. Why not go for the best?
From what I know this a a strange disease that "nothing" is normal. Hang in ther and do wht your gut tells you. Keep getting other opinions. I am ANA positive I also have hypothyroidism but I've had that four 45 years. I had 3 biopsys on my legs that said Lupus. that was last month. I have the extremities rash, extreme sun sensitivity. mouth sores, hair loss. before I had the biopsys my rheumy wasn't 100% sure I had lupus but he did say last Dec i had SLEI like my rheumy and i like my dermatologist. I just got a letter from my dermotologist-she's leaving the practice I am unhappy about her leaving . I like my pcp also. I have ve little wrist pain but I know that will change. the thing that scares me the most i s I have critical reactions to 5 of the best antibiotics and i know what will happen when i really need an antibiotic. Keep looking for answers, but keep positive. I guess one day at a time
freightliner
Hi, I'm glad you found the site. Everyone here is so supportive of each other. And it is nice to know that there are others that really know what is going on with you and not just in some sick competition. (My mom too!)
Anyways, I had a long road to a diagnosis of lupus with Sjogren's, fibro and a whole bunch of autoimmune crap. I just wanted to share my experience with the Cleveland Clinic. Now I know that there have been others who may have been helped but as far as I am concerned the two drs I saw were quacks! They, the resident and attending, did the exam and took a long time so I thought I'm finally going to get a diagnosis. He asked if I snored and I said only when I am sick and congested. My husband backed me up. So they decided I had apnea. They did the fibro pressure test where they poke you in certain spots. I tested positive for 13 out of 17 and they said I had a very mild form of fibro, but not full blown real fibro. Afterwards I was sent for x-rays, mris and a ton of blood work. The final result was a little bit of fibro but nothing rheumatological. Oh yeah, and I need to loose weight and exercise! I just about blew a gasket!
So I went for a year with just my gp treating me for fibro and I got worse and worse. When my parents and husband couldn't stand to see my hurting so bad they talked me into going back to see an rh dr. My folks saw a rheumatologist and took my records to show him and get his opinion. He was shocked and said that there definitely something going on. I went to see him and at the second visit he said I had lupus. And my rnp was also positive which means mixed connective tissue disease. The Clinic never even checked it! I looked at all of my labs and there were a ton of bad results. My SED rate was 109! My CRP was over 7! He has been treating me for 2-1/2 years and we are still working on getting things under control but at least he listens to me and doesn't think it is all nothing.
Sorry that was so long. I'm sure it was way more than you wanted to know. Lol! I hope you get the right diagnosis soon and hope you get your pain under control. Believe in yourself and surround yourself with supportive people.
Take care,
wendy
Thank you Wendy!! I hope you continue on the positive path as well!
Hi, remember that Lupus does mimic other diseases, and there are a series of tests that take along time for the doctor to go through to verify it is Lupus. So be claim and just wait out the process. If you rush things it might cause more problems. So don’t stress , it will be alright.smile also get as much rest as possible…Beverly L.
Well, Wendy, I am not surprised by your treatment at Cleveland Clinic. There are bad docs everywhere. My sister went to Mayo in Rochester, MN for the autoimmune issues and had already be diagnosed with fibro and she got some quack that didn't believe in fibro! My husband was at Mayo and got great care for celiac sprue. There are bad and good everywhere but I was hoping that Cleveland Clinic would be an answer. I hope you get to feeling better soon. I too went too long without being treated and I'm not sure I will ever feel good again. I have had times of feeling much better and they are very short lived but I cherish those times immensely. The very best to you.
Honestly, it sounds a lot like lupus. But a big part of diagnosis with lupus is a waiting and watching game. If the rheumatologist thinks a negative dsDNA means you don’t have it, that’s a big oversimplifying! It could be that you have it at times but not at the moment of testing (it comes and goes), or that you have lupus without DNA antibodies. There are many other sets of auto-antibodies in lupus, although that’s one of the most specific ones (i.e. if you did have that test positive you would almost certainly have lupus unless there weren’t sufficient symptoms… But you have a list of relevant symptoms!) Sun-sensitivity is pretty specific for lupus and not associated with RA, and the headaches from lupus are migraine-like, and it can of course cause kidney damage and strokes/TIAs which may be related to your falls & weakness issues! Definitely pursue more detailed diagnosis of those episodes when they happen, since they are an emergency, and they might relate to your chronic/non-emergency condition as well. Strokes count as an official diagnostic in the criteria for lupus, as does sun-sensitivity, and positive ANA, and positive anti-DNA… Arthralgia and myalgia and fatigue are common symptoms but not specific enough to lupus to be on the diagnostic criteria. Did they check for thyroid antibodies as well? Those wouldn’t be lupus, but it’s common for autoimmune thyroid issues to co-occur with lupus (I have both…) The key here is they need to keep FOLLOWING your symptoms until the situation becomes more clear!
It’s very important for them not to apply a diagnosis when it’s too early to tell or differentiate it from other potential causes, because a diagnosis would lead to initiating treatment for lupus (quite nasty drugs, really, but needed and helpful if you do have it) and also putting the search for other causes on hold! However, it’s essential to keep following it because a negative test can’t “rule out” lupus, it merely doesn’t confirm it at this time. It needs to be checked again, especially when symptoms flare up. My first rheumatologist had me do this, call for an appointment and try to come in right away when symptoms worsened, so he could see it in action. It worked out well because he had a pretty wide-open schedule for some reason, even though he was a good doc! Probably because of his independent niche practice in SF Chinatown, I had just found him myself instead of through referrals from my primary/health network. I highly recommend finding a doctor you feel will keep looking for answers and listening to your symptoms, rather than one who wants to dismiss it. But your doc may be doing exactly what I’m recommending and merely miscommunicating it! Asking the nurse for more explanation may help you understand what she’s sorting out, and definitely bring a list of questions to your next appointment!
I’d say ordering those heart and lung tests is a way to check for some of the more dangerous/urgent problems that could be caused by lupus, but having them negative certainly won’t mean you don’t have it. I wonder if your doc is familiar with neuropsychiatric lupus (NPSLE) which may explain the headaches and neurological symptoms… Or you may have several separate conditions adding up to look like lupus that will each need their own diagnosis, but the law of parsimony (“Ockham’s razor”) should make a doctor think that’s less likely, especially in the presence of ANA! Both situations would be very complicated to diagnose and deal with, and some doctors are geared toward pretending everything’s fine (just like some patients do), while other docs are more nervous about missing something (just like some patients!) It will help you feel better if you aren’t despairing, so she may be saying she “doesn’t think it is” to keep you calm till there’s more solid evidence. However, it seems like your concerns are valid and she hasn’t wanted to put 2 + 2 + 2*5 together and you could use a doc more committed to seeking out answers. I have really liked all the rheumatologists I’ve worked with because they pursue answers even more diligently when they don’t know (instead of hand-waving when they don’t know…)
Not sure what your alternative choices of doctor’s will allow, but I’d suggest:
A) asking this doctor for clarification (perhaps the nurse, but doc would be better to ask directly!)
B) getting a second opinion (do this right away if you’re not satisfied with your doc’s approach you found out in step A!)
C) in both cases, keep in mind it’s a waiting and watching game, but really important to treat ASAP if it is lupus! Much better chance of remission when diagnosed promptly and treated adequately within the first year of diagnosis, so whoever is working on your case should be motivated to watch proactively, seeking out the moments when the disease might show itself more clearly, rather than “waiting to see” if it gets worse. Getting worse means harder to treat!
Best of luck, take notes on your symptoms and questions, and of course take good care of yourself!
Brynn
Brynn, your response was amazingly helpful and up lifting!! I now have something to go on and you seemed to hit it right on the nose! Some doctors are nervous and would rather play the wait see game. I don’t have the time for wait see with my job!! Thank you thank you and bless you!
You are so welcome! I was actually all ready to apply for medical school the summer I got diagnosed, but since I was struggling so much and knew what I’d have to be ready for over the long haul I changed my plans pretty quick (I’ll be attending grad school to become a speech-language pathologist in the fall instead, and I’m super excited for it!) I was sad my knowledge and interest in medical conditions (broader than just speech/voice/neuro-language topics, which are certainly exciting too!) wouldn’t be utilized fully… But then realized, duh, I can use it to help others understand about lupus and the medical system, as much as I was fortunate to for my own diagnosis and adjustment! I also worked admin/light clinical jobs in autoimmune disease clinical research for two years after college… I had no idea yet about my own illness (though I had been having symptoms which built steadily throughout until I couldn’t work for the past year! Now I’m doing a lot better, in part because I had a quick diagnosis and early aggressive management, at the advice of the rheumatologist I used to work for on his lupus and RA research!) Ask me anything you like in prepping your questions or interpreting the answers (this goes for all LWLers!) If you’ve read my posts you know I’ll have a long answer waiting for you! 
Brynn
Oh, and I also just went back through older comments (all helpful, great job everyone! Now if only all the pre-meds I used to study with who are graduating medical school this year could be so thorough and compassionate… But there is an increasing focus on “patient-centered care”, finally…)
I just wanted to add that things with my mom have been nearly impossible! She has numerous chronic health problems, many of which her while family dismissed as emotional overreaction, etc, and now she’s pulling the same BS with me! When I was a kid I was always there supporting her–back rubs when her fibro was flared up, visiting and listening non-judgmentally when she was in the hospital a few different times, taking responsibility to drive my sister and I around and being quite independent for meals and activities when she had thyroid cancer while I was in high school, bringing her bowls of ice cream to soothe her radiation-damaged throat while she laid on the couch most of the time with fatigue and depression as well as chronic pain from a surgery that left her with sciatic nerve damage, doing my best to tolerate her angry outbursts about my dad who had divorced her and those directed at me as her primary scapegoat for her anger/resentment problems… We had that role-reversal for a long time, and I think she just can’t handle it being the other way around and having to actually grow up and take care of her once ultra-independent daughter. She has been providing my financial support the whole year I haven’t been working, but not without intense criticism of my “failure to launch” and health excuses for perpetuating inappropriate dependence on her at age 25, reminding me repeatedly my parents do not have to take responsibility for supporting me financially at my adult age, but do so out of the goodness of their hearts (keep in mind I am not married, not even dating seriously, and have student debt and no savings yet, due to being so young to be so sick!!! And be aware my stepdad is an Amazon exec and my mom lives in a 5k sq-ft house with custom curtains that she re-does constantly for entertainment, and takes my young half-siblings to resorts in Mexico each winter… Then complains to me that my “inappropriate needs” are cutting into their college savings, of which there hadn’t been any for me, and my parents’ retirement, which I’m sure will be cushy no matter what when my stepdad cashes in his Amazon stock options!) In all my recent interactions with her I have realize she was listening to me express my painful, debilitating symptoms and emotional challenges adjusting to it, which I expressed to her because I knew she could understand it based on all she’s been through, only to have her store those things up and turn it back on me later as evidence of it all being in my head and worse, inflated to use as a manipulation tactic against my family to win my battle of entitlement…
My mom actually went to the level of writing a long letter to my psychiatric nurse practitioner (who shared it with me) and who knows how many of my other doctors, detailing the ways she feels my mental health is primary (nevermind that an NPSLE sub-specislist has called my case “probable NPSLE, clinically definite SLE”) and lupus is just this little thing that I would have been able to “take in stride” in my overachieving past self. She also attached an 11-page printout of an article on hypochondria as a legitimate and serious concern, and hope for successful psychological intervention!!! My therapist did not diagnose me with hypochondria and a personality disorder and send me to residential rehab, as my mom strongly suggested for her to do (along with exaggerated or false descriptions of my “troublesome behavior” as well as deeply critical remarks about my character… Plus statements and an overall tone showing her own inflated ego and finger-pointing mentality!) Instead, my psych NP who was providing me with extensive supportive therapy along with CBT/DBT principles and psychiatric management of my co-occurring mood and anxiety disorders, gave me a book to read about parental narcissism and role-reversal, which is common with a chronically I’ll parent. The title is “Children of the Self-Absorbed: An Adult’s Guide to Getting Over Narcissistic Parenting” and I HIGHLY recommend it to those of you who are having trouble. Even if it extends beyond the scope of how your parents are/have treated you, it has helpful points to understand why they might behave so insensitively and hurtfully, as well as strategies of emotional self-protection when they lash out. Aside from putting me at ease that my mom’s backstabbing rants are not changing my healthcare providers’ minds, understanding the concepts in the book has been so liberating to know I’m not to blame and that all the blame reflects on her projections of self-blame… And it’s a huge motivator to me to get my health and mental health in order before I try to have a family!
This is such a hard road, but I’m convinced that with our mutual support of each other we can grow and overcome to have a much more satisfying and compassionate life than many “healthy” people achieve in their obsession with personal gain and competition, we are BLESSED with the stark reminder to do what is right for us without bending criticism, advocate for ourselves medically and otherwise, and to understand serious pain and thus be immensely more caring and understanding towards others. I know I have found more peace and happiness in some parts of my human experience through this extremely tough year, despite all the things threatening to beat me down to the point of not getting up. I have this group to thank for keeping me positive and wise for the journey! You all make me want to keep going, and sharing what I know and have learned makes me feel valuable even while I’m not “contributing” to the workforce or my family/friends. My good friends know I am giving a lot along with my asking for help… I wish my family were open enough to see it, but since they are so judgmental and unreceptive, I have to move along without their support and find it through places like this group!
Brynn
You have been through so much! Your mom sounds very familiar. Def a good step beyond mine, you will be in my prayers and you will help so many with your support and knowledge!!