Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my best-
Carla


Carla Ulbrich

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Sjogrens vs Lupus: Smackdown

OK this is going to be a long rant. I'm mad.

I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.



What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"



Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.


Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.

Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.

I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )

I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.

20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.

It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"

Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.

Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.

Sjogren's syndrome symptoms include:

• dry eyes
• dry mouth
• joint pain or inflammation (arthritis)
• Raynaud's phenomenon
• lung inflammation
• lymph node enlargement
• kidney, nerve, and muscle disease

(from http://www.medicinenet.com/sjogrens_syndrome/page2.htm#3whatare)

lupus symptoms which overlap with Sjogren's symptoms:

•  Raynaud’s phenomenon
•  joint pain/ inflammation
•  lung inflammation of the lining around the lungs (pleuritis)
•  Kidney disorder – persistent protein or cellular casts in the urine
•  Neurological (nerve) disorder – seizures or psychosis

   

lupus symptoms which do NOT overlap with Sjogrens:

• Fever (over 100° F)
• Extreme fatigue
• Hair loss
• Inflammation of heart lining
• Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
• Discoid rash – a rash that appears as red, raised, disk-shaped patches
• Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
• Oral ulcers – sores appearing in the mouth
• Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),   lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
• Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
• Abnormal antinuclear antibody (ANA)

If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.

A few things to consider asking for:

• kidney function tests.  Sjogren's or lupus can affect kidneys.
• a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
• consider bringing a trusted friend to your appointment with you. Doctors are used to that.

End of rant, and a few reasonable parting words:

Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and

And if you are a praying person, that doesn't hurt either.

My best wishes to those who are struggling for a proper diagnosis-

And one last thing...  %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
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