WOW!! That was HORRIBLE!! My GP sent me to this guy because I had a third ANA test come back possitive and have been sick for 5 years. This last test was 1:640. We waited and hour and 15 minutes and the guy came in the door with an attitude. He was rude and disrespectful and because I don't have alot of the classic symptoms of Lupus, he totally dismissed me and asked me what else I wanted him to do?????????
He did send me for a Lupus panel but WOW! Not sure what to do next especially if the tests come back negative.....
Hiya B, to start may I say something - ggrrrr!! it makes me so mad when anybody - not only doctors - have this attitude and way of going about things !!
Ok so having a positive ANA does not have to mean you have lupus. Approximately 95/98% of patients with SLE will have a positive result, but the majority of people with a positive result do not have SLE. A positive ANA can be found in many conditions, including Sjogren's syndrome, scleroderma, rheumatoid arthritis and mixed connective tissue disease. Many normal healthy people will also have a positive ANA. Therefore a positive result test on it's own does not mean that person has lupus.
A lot of doctors work on the premises that a titre lower than 1:80 is usually considered negative. You say though you results came back positive 3 times but he said you do not have the classic symptoms of Lupus, and he totally dismissed you and asked you what else you wanted him to do? Well for a start get a better bedside manner and be more understanding of a patient's fears and worries! I shouldn't judge him because I don't know him but he seems to be very harsh.
There are a number of features that a doctor would look for to go alongside the ANA result for diagnosing lupus. Some of them include a butterfly rash, arthritis, pleurisy, blood abnormalities, kidney disease, etc. in addition to a positive ANA test before making a diagnosis of SLE. There are more which I would find interesting to know if he even spoke about. Questions should always be asked about your history of medical problems, he should go back as far as your childhood too for him to get a full and up to date catalogue of all that has happened to you.
If he has not done this - and he should have done - then I feel it would be better for you, if you can, to change rheumatologists. You cannot and should not be left in limbo like this. It may be that when you are asked the questions and give the answers it turns out not to be lupus, but until the Q & A session happens you will not know.
Good luck with this. Please get back to me if you think I can help further. Take care.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 04-30-2009 at 10:06 AM.
Exact same thing here ..two positive ana results and many lupus symptoms. Rheumie dismissed me said go home and exercise. I 'll be sure to do the next time I feel like getting out of bed....been there 4 months. almost.
Bfones, hi. Sorry to read rheumie is BIG FAT JERK. I agree with everything GW posted about how a first appt. with a rheumie should transpire. Your rheumie didn't come close, in my book, either.
What are your symptoms? (If you posted them earlier, I apologize for losing track.) FYI, the diagnostic criteria on the "sticky post" ( = permanent info post) at the top of the thread list only contains 11 criteria (but some of them are 2-part, 3-part, etc.) Thing is, a lot *more* things can be seen in lupus than "make" the criteria list. And maybe a person only has a few, until TESTS come back, at which point *more* may be met. Thus a doctor should never be dismissive so quickly, without (ahem!) getting current labs.
Another reason not to be dismissive so quickly: the criteria should be viewed as "permanent". i.e., think of each you've *ever* met as being checked off in indelible ink. (That's how my rheumie described it to me.) So what GW wrote about taking *lifetime* medical history takes on even greater meaning.
To read more about the above, and to get a quick primer on some *other conditions* that can cause similar symptoms (incl. positive ANA's), I strongly recommend Dr. Daniel Wallace's lupus hardcover, the 3rd edition, which may be found in most libraries.
Now I'll attempt to cheer you up (let me know whether it worked, OK?). What I recall about first rheumie I saw is (a) rheumie kept fluffing hair, while smiling flirtatiously at my husband; (b) rheumie had perfectly polished nails & tapped same on desk in hubby's direction; (c) rheumie asked hubby four times whether hubby plays golf (?!); (d) rheumie barely looked at me, and certainly didn't waste time taking my medical history or inspecting my widespread rash. NOW HERE'S THE PUNCH LINE: I didn't much care for *HIM*. Nor did hubby. Yep, you read that right. I was torn between disappointment at the anti-medicalness of it all---and shrieking, hysterical laughter as I sneaked peeks at hubby's stunned face.
But my next rheumie? Huge breath of fresh air. Highly competent, clear as a bell, and has helped me a lot (though something in me occasionally misses the absurdity of rheumie #1, mostly when I'm annoyed with hubby... )
Seriously, now... I hope you post more soon. You're not alone with striking out with a doctor, believe me---the trick is in how you recover & move forward. Warm wishes, Vee
Last edited by VeeJ; 04-30-2009 at 12:17 PM.
Wow, thank you everyone for your responses. I know I'm not alone, I've heard the horror stories from friends of mine who share similar experiences with incompetent docs.
He didn't ask anything about my past history except he went down a check list (didn't make eye contact at all until I got in his face)and asked me if I had seizures three times. He first asked me what I was doing there and when I told him I hadn't felt good for 5 years, he said "well what does THAT mean?"
So I started giving him symptoms and he kept flipping through my file and wasn't listening.
ANYWAY...there's alot more that happened but you all get the idea about the JERK.
I have had Rheumatic Fever(as child) , Mono(as a teen), Pneumonia(twice as an adult), weird skin rashes, thyroid disease, chest pain, weird liver panel results that resolve, aching feet, anemia, headaches, high blood pressure, chills...etc. Just weird stuff.
I know there are alot of other autoimmune diseases that this could be and would have liked to have that discussion with my doctor (who I waited an hour and a half for and probably now owe $150 bucks for NOTHING!) but that obviously was not going to happen.
Bfones, my list of symptoms from early childhood to mid-40's [aargh!] is fairly close to yours. For me, no thyroid or high BP; but for me, add convulsions as a kid, chronic urological problems (incl. stones), and 20+ years of GI misery. My recurrent skin rashes were my very last problem to appear.
As you can see, like yours, many of my symptoms could have meant one or more conditions, EXCEPT for my 8+ years of photosensitive arm/torso rashes. And 5 or 6 local dermies blew those. But a SMART dermie can be invaluable, like the one I finally saw. He did another deep-punch biopsy, but THIS TIME also did immunofluorescent stain tests which can yield unique, irrefutable results that can prove a rash is a LUPUS rash.
There are multiple kinds of lupus-specific rashes, BTW, beyond the best known ones like butterfly & discoid/scarring. (My bad luck was to have a less common one.) So---what do your rashes look like? How do they feel? When do they appear? Where? Have you seen dermie(s)?
Also, there are conditions other than lupus that feature many similar symptoms plus rashes.
I'm sorry you're at an impasse & hope it's only temporary! With my best, Vee
P.S. Bfones, did you read the "sticky posts" yet? Look at top of thread list. In the one about crietria to Dx lupus, there's a second section with "alternative criteria", which you may find interesting given that you had a variety of things earlier in life. My eyes popped when I first read that list, since it described my early life. Bye-bye, V.
hi bfones ... also just been to a rheumie (been going for 6years) and feel like i should ask for my money back as he has missed the dx ... but i won't waste any precious energy on another thought to him. i have to proceed fwd and find another doc - only 3 in my area all at the same hosp ??? still looking. i am continuing to look into my symptoms and and not going to take his 'word for it' anymore ... if things happened to be dx i will make sure he is sent a copy of results.
so i feel the distress and hope you can keep pushing ... we both will find a doc meant for us!
someone said to me recently that a new rheumie can be a gift and i see the wisdom in those words!