Come Back When You're Sicker

Question:
I've had dry eyes for 12 years, constant phlegm in my throat for 3 1/2 years, dry mouth for 6 months.  7 doctors over 3 years can't figure out the phlegm problem. When the dry mouth came along 6 months ago, the internet led me to Sjogrens.  My primary doctor said, "Maybe. But if it is, there is nothing we can do but manage the symptoms."

At my annual eye appt., I told my eye dr. about the phlegm and dry mouth (he of course already knew about the dry eyes) and he said we need blood tests: "sounds like Sjogrens but we need to find out if it's primary or secondary."  Had the blood tests last week.  Can't get into a Rheumatoligist until the end of January.  In looking at the blood tests I still have no idea what I have.

ANA screen is positive and speckled (1:40). Rheumatoid Factor: 11 - says less than 14 is good.  Sjogren's Antibody (SS-A): negative.  Sjogren's Antibody (SS-B): negative. SED RATE: 2.  It sounds like Sjogrens but the blood test says no.  I read that of 11 Lupus symptoms and you need at least 4 to probably have lupus.  I only have the positive ANA. None of the other symptoms.  My middle right hand finger has been hurting at the bottom joint for a week and a half but I don't know if I injured it or if it's arthritis coming on.  That is the only thing close to maybe having 2 Lupus symptoms instead of just the ANA. I am baffled.  Any ideas?


Hello!
Thanks for writing.
It sounds like your symptoms are not severe enough yet that they have developed into an easily-diagnosed disease.

That's bad news in that it's hard for you to get an answer but good news in that you still have pretty good health and quality of life, it sounds. Doctors often tell someone like you "come back when you're sicker" so it's easier to diagnose. How about instead, if you don't get sicker and just get all better?

It definitely sounds like to me that something is "off" and you are getting warning signs from your body that you are on the wrong track, either with stress, or your eating habits, environmental allergy, or something else in your life that needs to change. It's causing your body distress and the symptoms are its way of asking you to get back in balance.

First I would look for food allergies, or other allergies, because of the phlegm.
The first thought that came into my mind when I read your message was "Is she eating dairy regularly?" Dairy can cause a lot of phlegm. Other food allergens are gluten, soy, eggs, nuts, corn, yeast.

Have a look at this article from Dr. Mark Hyman and see if it resonates with you.
http://drhyman.com/blog/2012/02/22/how-hidden-food-sensitivities-make-you-fat/



Another progressive, nutrition oriented MD is Dr. Joel Fuhrman (www.drfuhrman.com). He has had numerous success stories with healing "incurable" "chronic" diseases like Psoriasis and Lupus (and probably Sjogrens too- many people with lupus also have Sjogrens diagnosis, including me). I have reversed my bad blood tests and vastly improved my health by eating gluten-free and dairy-free and getting rid of nutrasweet (asparatame, diet coke) and eating a lot more plant food.

You don't have to slide downhill. You don't have to end up witha  disease that you can just "manage." You don't have to live with phlegm in your throat for the rest of your life. You can nip this in the bud and not have it turn into Sjogren's, or any other autoimmune disease.

well wishes-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get Carla's book! http://tinyurl.com/348hroc

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
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs 
www.linkedin.com/in/carlaulbrich 
www.twitter.com/singingpatient 
http://tinyurl.com/348hroc- Carla's book

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
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book here: http://tinyurl.com/348hroc

13 Diseases that are Difficult to diagnose

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma


IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up.  The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.


And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

Could I have Lupus?

I recently signed up for Allexperts.com, where I answer questions about lupus from people who write in.
One of the things I am asked repeatedly is "do I have lupus?"

Kind of silly to think I could diagnose them via e mail, especially since I'm not even a doctor, or a nurse, or any kind of medical professional. But the one thing I have above many doctors is this: I'm listening, and I'm taking their problems seriously.

How exasperating to go to the doctor and be told you're imagining your problems, or that you're "just depressed" or  something other pat answer implying you're a hypochondriac. Seriously, if I want attention the doctor's office is the last place I'm going. Sit in the waiting room for 2 hours past your appointment time then get 5 minutes with someone who's not even listening... If all I want is attention, I could just make a sex tape.

Getting back to the topic at hand- how to get diagnosed. How to find out once and for all whether you might have lupus. Here are a couple great resources. The LFA lists the classic symptoms of lupus:

The Lupus Foundation

This website discusses the various blood tests (none of which are definitive) used to try to determine whether it's lupus:

My Life Works Today

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com
Next time, I hope to discuss how all diseases are really just one disease, and wellness and illness are a spectrum.