Burning Question: lupus.org — Could You Have Lupus Checklist

[QueenV]

I just came from http://www.lupus.org/newsite/index.html and used their interactive Lupus symptoms checklist: http://www.lupus.org/newsite/pages/lupusChecklist.aspx entitled "Could You Have Lupus?"

I answered yes to 13 out of the 15 questions — 14 if you count the question at the end of the checklist. Lupus has been suspected since 1983 when I first became very ill, but I've been told over and over that my blood work is normal, therefore I do not have it.

Now I have a positive ANA, C3 is low, chronic hematuria since '83, and I have Raynaud's. I also have the malar rash that worsens greatly upon sun exposure. If I'm not sun exposed or in the midst of a flare I am able to cover the rash very well with makeup.

A urologist I once saw found protein and granular casts in my urine during a cystoscopy (the urine sample came directly from my bladder), and I am still spilling protein. The Uro said the casts and protein were probably due to the "lupus" that my GP suspected. The GP could not or would not confirm lupus, let alone treat me for it. There just aren't any good rheumys in my area, so I travel four hours to and from my rheumatologist. I won't list all of the symptoms I've had through the years because there are too many to count. My rheumatologist (whom I really like, by the way) doesn't know about most of my symptoms. After all I've been through I'm very gun shy about bringing up the lupus question. I've been dismissed by 5 doctors since '83 because my complaints were "unfounded" and I kept on complaining. I guess I'm afraid of losing my rheumatologist, but in a way I know that's an unrealistic fear.

My questions:

• Is lupus.org a reputable website?
• Should I print the list and give it to my rheumatologist?
• How would you approach your rheumy about lupus? I've scared a lot of docs away (correction: they've sent me on my way), so I must be bad at communicating or something.

I would appreciate anyone's input on this subject.

Thank you in advance,
Victoria

[soycoffee]

Welcome to this forum.

We who have been diagnosed with Sjögren's Syndrome, or think we have it without a positive diagnosis, are very experienced in the kinds of questions you are asking about how to deal with doctors, rheumatologists in particular. Also, some proportion of the forum also has Lupus. It's not clear from your post how you came to this site, and whether your lupus is secondary to Sjögrens, or primary.

The lupus checklist is an informative resource to summarize a symptom picture.

I think that by trying to include every symptom of Lupus in the history you give a rheumatologist, going back to 1983, you are running into a MEGO syndrome on the doctor's part, due to TMI (MEGO is short for "My eyes glazed over"; TMI means "Too much information.")

In answer to the doctor's "What brought you here today?", it would help to isolate the most difficult and pressing symptom at the present time. The symptom list would be helpful as a "bullet" summary of your history, if you put dates next to the list according to when the symptom first appeared. If it has appeared and gone away completely, mark it as gone. The doctor wants to know about NOW, not then.

WE, on the other hand, want to talk about all of the pent up questions from all those years of wondering and pain. Perhaps there's a collective book, here: Years of Wondering and Pain.

Each meeting with a doctor has its own dynamic.

Your idea of bringing the symptom checklist is a step toward handling the patient/doctor encounter without MEGO and TMI muddying the waters. It shows some thought on your part.

Remember the doctor's implied or stated "What can I do for you today?"

You might want to say -- I would like to try such and such a treatment for Lupus. That would usually force the doctor to find out why. "Doctor, I've had all these symptoms over the years; right now I feel horrible because of XYZ." Then comes the symptom list, subdivided into original symptoms and recent symptoms.

My rheumy opened the first encounter with the question "What is your goal for this interview?" My immediate answer was "A diagnosis." So we've been working on that, and Sjögren's was pretty obvious in some ways, not so much in others. So he has fussed about making sure the diagnosis is correct -- I think he would fuss in any case. Once it was clear that at least some tests were indicating Sjögrens, I immediately wanted treatment, but that was very slow to come. All I got to start was how much tylenol to take a day, and the dismissive comment that pain was "just Fibromyalgia." Or he will tell me that people have titers of ANA much much much larger than mine. He did begin talking about treatment with an antimalarial, and eventually settled on a low dose of Prednisone, which is helpful. But this is over three months. I've tried NOT to call him every day!

There are two primary things you want from your doctor, (Correct) Diagnosis, and (Correct) Treatment. A good working relationship is okay, too, but sometimes you will get a working relationship that leaves you uncomfortable. If that goes on too long, you may need to summarize the things you feel uncomfortable about, and see how the doctor responds. Sometimes the challenge is all the doctor needs. Sometimes not. Sometimes the doctor is the only game in town, and then you step very lightly.

OK. Now I'm giving TMI - Too much information.

I hope that you and your very likable rheumy get together on a diagnosis and a treatment plan.

All the best,
Soycoffee

PS I looked back over your post, and see that you are now going to this rheumy whom you really like, but haven't shared a lot of history, for fear of losing her/him as you have lost doctors in the past. Say so. Tell the doctor that, when you introduce the symptom checklist. Also, this likable doctor is not, cannot, clarify what a particular symptom such as casts in your urine *really* means or should have meant at some time in the past, so the thing is, to steer clear of seeking explanations after the fact. If it is something in the here and now, s/he is probably able to explain it, or say that it is unimportant right now. S/he cannot do that about past results and history. Also, don't watch "HOUSE!" Doctors don't diagnose or explain like that, in real life.

[Nancy60]

Hi QueenV,

Soycoffee's post has a lot of good tips in it.  I agree keeping things concise and to the point and using the checklist would be a good start. 

Yes, the Lupus Foundation/ lupus.org is a reputable site. 

I would probably start the visit with something along the line of:
"I have some medical information I hadn't shared with you before because I was afraid I would lose you as a doctor, and I don't want to do that, but I am concerned this might be more than just Sjogren's syndrome and that I might have kidney involvement."

(I wouldn't put in what you think it might be....leave that for the doctor to do). 

Then I would use the checklist to concisely go through the symptoms and positive labs etc... that you have had.  Indicate which are current problems and which were in the past.  Bring copies of lab tests that showed the positive findings if at all possible. 

If it were me, I would print out the criteria checklist and then under each criteria you feel you have or have had in the past, note when it occured, if it is resolved or current problem.  If you have the supporting test results to include (ie urinalysis showing casts, protien etc, low C3, positive ANA or other antibodies) include those. The doctor can then quickly look through the checklist and ask you questions if he wants further clarification.

the key I have found to working with doctors, is to prepare ahead of time what you want to discuss, keep it concise and to the point - a written list with short bullet points is good. limit it to 2-3 topics at most.  make a copy for yourself and one to give the doctor to look at so you both can be sure to address what is on the list. 

Your list for this appointment should be: 
Ask about possible other diagnosis based past medical history not shared previously/kidney concerns. 
Share symptom checklist from LFA and prior medical records/lab reports. 


I hope this helps and that you have a good appointment!  Keep us informed.

Nancy

[melissamrrll]

Please tell me what chronic hematuria can indicate??? I have Sjogrens. Is hematuria a symtom of Sjogrens or it is a symtom of another disorder? I have had blood in my urine for many years-undergone many tests to find out why.

[QueenV]

Thank you for the excellent advice. I'll try to stay focused on the here and now, but will also take pertinent labs and the checklist with me. You are all awesome!

Melissa — chronic blood in the urine can have many causes. From everything I've read, Sjogren's isn't a cause. But other autoimmune diseases can affect the kidneys. I'm a newbie, so I hope someone more knowledgeable comes along and corrects me if I'm wrong.

[A66eyroad]

Melissa, I'm not a medical person, but I guess I would have to ask the doc what s/he's looking for! I did a quick search on Google and read the article on blood in urine on the Mayo Clinic website, and it looks like there are lots of things that can cause that.

I hope you get some answers!