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

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

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"What Would You Do?"

A reader writes in and asks what I would do in her circumstance.

Hello Carla-

I am 34 year old mother of 3. I've been hypothyroid since I was 18.  I came down with an unknown virus in December that gave me severe leg muscle aches, 102 fever, and chills, followed by an itchy rash. I was given a steroid.  

I still had symptoms coughing up mucus. A "minute-clinic" doctor put me on an antibiotic. I started feeling better but at some point noticed my fingers felt like I had hurt them playing a sport.  I have  stiff feet in the morning and when I wake my feet, knees, and hands are rebelling. I saw my doctor Feb. 2 and she wasn't concerned but ran an arthritis panel, nothing came back abnormal except ANA. 

She said she saw no reason to send me to a rheumatologist if ibuprofen is working because she didn't see anything going on.  In other words, no other symptoms of any autoimmune diseases.  My family and I are now trying to cut out gluten.  I did develop psoriasis after the birth of my second child. 

We are working on my thyroid levels, and waiting to see on the ANA.What would you do?

Hello!
Thanks for writing. I will attempt to be as helpful as I can.
I am not a doctor but I have 20 years' experience living with 4 autoimmune conditions and I have tried everything under the sun- mainstream and alternative, and some of it has helped tremendously.

Looking at the bigger picture, I do see autoimmune, as psoriasis is an autoimmune disease. And some forms of hypothyroid are also autoimmune. (Do you have Hashimoto's?) It is not uncommon, once you have one autoimmune disease for others to appear at some point.

You ask what I would do.
I would do anything for my health, and I have. I've got acupuncture, chelation therapy, had my fillings replaced, chiropractic, massage, lymphatic massage, energy medicine, psychotherapy, prescriptions, physical therapy- the list is long.. But in the end, the long-term things that helped the most (and cost nothing, except for the blood test) were doing chi gung and changing my diet: I cut out gluten and dairy (and nutrasweet, eggs and bananas) after having food allergy tests done. These were not pin-prick tests, which check for immediate reactions, but a blood panel that checks for delayed reactions. If I accidentally eat dairy (party/ restaurant) I know because my tendons flare up. If I accidentally get some gluten, I know because my joints swell and hurt. And if i want a migraine, give me MSG or nutrasweet. Just one life saver with nutrasweet, that'll do it.

I don't know where you live, but try calling/ e mailing Dr. Mark Hyman's office and see if you can get an appointment or a referral to a functional medicine doctor. That kind of doctor will look for and remove underlying causes of symptoms, rather than just relieving symptoms with drugs. Sometimes it's allergies, sometimes vitamin deficiencies. If you can't find a functional medicine doctor, try an osteopath. Ask around for a recommendation. Also try ACAM, http://www.acamnet.org/

Call a yoga studio or health food store if you have to and look for some leads on effective knowledgeable healers. Decide if you want someone to get to the bottom of this. Once you get clear on that, then don't let up knocking on doors and asking questions until you're satisfied with the answers you get.

That is what I would- and did- do, and I got my health back.


I believe we were not meant to suffer. We simply live in an unhealthy environment and we have to learn to protect ourselves and be healthy despite some of the things around us that are working against that.

Well wishes-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

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The ANA Test and SLE lupus

The ANA test. It is the antinuclear antibody test. Though it is used to help diagnose someone with lupus, it is not a definitive "lupus test." Read below of an e mail I received from someone who is trying to get a definite lupus diagnosis (a very frustrating place to be), and has put a lot of stock in getting a positive ANA test result (positive ANA test result would go in the "might have lupus" column, but negative ANA result does not rule lupus out). I have added in explanations for all the abbreviations, since I know now everyone who reads this knows the medical lingo.

 
Dear Carla,

I have been being treated for SLE {lupus}/MTCD {Multiple connective tissue disorder } for about 4 yrs. I've had DVT {deep vein thrombosis}, PAH {Pulmonary arterial hypertension}, spilling protein, Anemia, low white blood cells, low RBC {red blood count}, low hemocrit {iron deficiency}, low vitamin D, high CRP {C-reactive protein, indicates inflammation}, c3/c4 complements {protein linked with immune activity} mildly elevated, high sed rates {indicates inflammation} in the hundreds {that is extremely high}, etc. - all the symptoms you can imagine, but always a negative ANA. 

The entire time I've been on many medications from prednisone, methotrexate, to now placquenil for the last 2-3 years about. My Dr. has ordered another ANA panel. I just want a definite answer. I don't believe any one can cause a ANA positive test but I do believe my medicine probably controls it and my flares. So I want a true diagnosis. Should I stop my medicine before taking this test again? wait till I'm in a bad flare? Is having the test done on one of my bad days enough, or should I sit in the sun as crazy as it sounded? No, I don't want to be sick either! God knows I've suffered enough! But I just want a real answer. It seems to me that I'm tittering and the Dr. is not sure what I have. If doing something will make me ill but give serenity in knowing the truth I need to know, I'm going out of my mind! Thank you for listening and hopefully you can give me some insight.
- name withheld

Hi (name withheld)-
I know how frustrating it is to not have a definite diagnosis.
It took me 2 years of visiting bunches of doctors before I was finally diagnosed with lupus.
I did have positive ANA at the time. But here's the thing about that ANA test. It is not a perfect, specific yes/ no "lupus test."

You can have a positive ANA and *not* have lupus. You can have a negative ANA and yes, have lupus. The fact that there is not one test for lupus is one of the reasons it is so hard to diagnose. Lupus is diagnosed with a combination of tests and symptoms (past and present). One big red flag is inflammation and you certainly seem to have that. You may find this article helpful: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

I had severe lupus and have been able to turn it around with diet and lifestyle changes. In fact, my ANA tests are now negative.

I would like to strongly encourage you to NOT try to make yourself sicker so you can get a definite answer. I understand why you want that answer once and for all, but I'm not sure you can get sick enough to get the answers you want.

Whenever I'm being told to go get a test, I always want to know what will change once the results come back? (Some tests are just unnecessary and expensive). What if you go sit in the sun, stop your medications, send yourself into organ failure and your ANA test still comes out negative? And what if it comes out positive? Well best case scenario is now you are very very sick and they still may hesitate to call it lupus. For some reason, they just don't like to hand out that diagnosis. But if they did call it lupus the only thing that would change is your having a label for it. The medications would be exactly the same.

I understand it's frustrating. I truly do. You are not alone. It routinely takes people (mostly women, mostly being told they are crazy or hypochondriacs while they are suffering) 2-5 years to get diagnosed with something like lupus. I was so frustrated by my chasing a diagnosis for 2 years that I just broke down and desperately prayed to God for a correct diagnosis. I was diagnosed the next day.

My suggestions to you (besides trying a desperate plea to God) is to just assume you have lupus, or something autoimmune and serious, or MCTD which is in my opinion lupus by another name. They are treating you for lupus, judging by the drugs they are giving you.

Instead of trying to get sick enough to finally get that answer you deserve, consider turning it around and thinking about how to get healthy again, reclaiming your health and leaving all this medical mess behind you. That may sounds crazy, but it's possible. If you'd like to read a bit about more about what I do to stay healthy, here is my blog http://lupusandhumor.blogspot.com/

All my best-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
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