1st Rheumy appt

[coxclan5]

My doctor is sending me to the Rheum on July 3. He thinks it is "highly likely" I have lupus even with having the negative titers on my ANA. I have all the other symptoms for the most part.

I am wondering what to expect from the Rheumy...lots of bloodwork? What kinds of tests, etc.


My family isn't being very supportive. My mother keeps saying "you can't have it!" because she knows someone who is MUCH older who died from lupus complications. I keep telling her it isn't the same disease now as before, that there are so many more options than 50 years ago.............my mother in law has flat out said "you're too young!" and thinks it is all in my head.

I really need support. Sigh.....guess that is just part of it.

[LTich]

You mother doesn't know what she is talking about. I guess she has never heard of Pediatric Lupus. Children, teenager & adults DO get this disease. It can be early or late onset.

ANA's can start out negative & turn positive as the disease progresses. It can switch back & forth from positive to negative, with treatments (mine does this). Sometimes it comes down to catching it when it's positive. Some people have severe SLE & never test positive. Certain labs have different criteria for testing & their results are not as reliable as other labs. In my opinion (and the opinion of many others, including doctors), the ANA is worthless in diagnosing Lupus, by itself. The diagnosis should be made on the basis of symptoms, past medical history, family history & a the full set of tests designed to diagnose it, all done by a competent Rhuematologist & lab. Only when all of these factors fall into place, can an accurate diagnosis take place.

Your Rhuemie should give you a full exam & battery of blood tests. You need to bring in your past medical history as well as your family history for the visit. Make sure to write all your symptoms down, keep a journal if you have to (I do) & bring that to your appointment. Make a list of all your history/symptoms & print out a sheet for him to read/keep. (I can show you my outline, if you like, to give you an idea on how it's done.) I have found it to be very helpful & doctors really appreciate it.

Many of us have problems with unsupportive family members & can really sympathize with your situation. Sometimes a Lupus diagnosis is hard to get. It took me 10 long years to get mine. Just try to stay positive & keep fighting for the care you deserve.

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Lisa

[helloos]

Hi there!

Your doc will run blood tests, go over symptoms and family history. Make sure you have a complete list of your symptoms and any other tests or records that may be helpful. If you can take pics of any rash, redness, swelling as it occurs that will be helpful too in case those symptoms are not present at the time of your visit.

As for others, yes, I agree, we all have to deal with family and people who are just unsensitive to all of it and have no clue what Lupus really is.

Good luck at your appointment !