[moomoo1976]

OK i have had blood tests that have come out negative for lupus, but i am showing so many signs that i have it. I also found out that my 2 sisters have lupus and my dad said it took years to get a dx. My hair is falling out, some days i can't even get out of bed because of the pain, i have the butterfly rash and chest and stomach pains also have inflammation around the heart. I have a doctors appointment tomorrow and i really don't know how to tackle this and make the doctor see that i might have lupus.

 

[Maia]

What kind of doctor are you seeing tomorrow? If it's not a rheumatologist, then be sure to ask for a referral to see one. They are usually the only ones to make a diagnosis of lupus when there is negative bloodwork. Other ways to get a diagnosis with negative blood work is through a positive biopsy (of skin or kidney if there is kidney involvement). Only rarely will a diagnosis be given with only symptoms but zero positive "proof" via bloods or biopsy.

I would be sure to mention the fact that lupus runs in your family, with two sisters already diagnosed. It helps to bring a symptom list to concisely state what the issues are for you (helps to make sure you don't forget anything). A medical history list might be helpful too. If the doctor still feels unable to make a diagnosis of some sort, don't give up. It can take a while for bloodwork to turn positive, but there are expert doctors out there willing and able to diagnose and treat suspected autoimmune diseases (often with the label of UCTD - undifferentiated connective tissue disease). The treatment for that is often the same as that for non-organ involving lupus.

Do you know exactly what blood tests were already run, and what the values were? If possible, try to get actual copies of the blood test results.

Good luck at your appointment.

 

[helloos]

I wanted to wish you well at your doctors appointment and I hope that this doctor will listen to you and yes, I agree your family history is very important.

Hope you feel better.

 

[halfpintfl]

Hi Moo, You should have been going to a Rheumatologist all along. Who have you been seeing? Who took the tests that told you that you have inflamation around your heart?
Do you have any pictures of your butterfly rash? People think that you need all the right blood tests, or no diagnosis of Lupus,...wrong. The blood tests are just a guideline for the dr. as to which direction to go. You need to make lists. 1-family medical history, 2-your medical history, 3-your symptoms, when they started, and how they feel. A dx of lupus comes a lot more from your symptoms, what you tell the Rheumy, what he observes while he is watching you during the exam, and more. There is no one blood test that can say"yes" or "no" you have lupus.Make a copy of all that you wrote, hand one to the dr. as he is leaving the room, and tell him that it is for him to put into your file(that way he can read it later). and the other list you take home and add on to as needed. Also , you can take a list of a few questions, cause that is probably all you will have time for. Let us know the outcome.:wink2: ​