What do I ask the doctor at the first appointment?

Good morning to you. I haven’t read all the responses yet. Please look up Sjogrens disease. I have that and lupus. You can Google th e different ana patterns online for an explanation of them. That might help some. There is so much information that I got and still do get overloaded. I hope you get some answers for her. Make an appt with a different doctor for second opinion. One rheumatologist looked at me like I was crazy or nothing wrong.

Keep looking for the answers for your daughter and remember that lupus is only one of many auto-immune disorders, many of them having the same symptoms. My 23 year old daughter got her lupus diagnosis last week after 9 months of testing and a waxing and waning of fatigue, rashes, joint pain. Her original PCP was not receptive to even looking at the possibility it could be an auto-immune disorder. Switching her medical provider practice and a new PCP made all the difference. The new PCP was well informed on initial testing needed for auto-immune disorders. My daughter kept a diary of her symptoms. Morning temps, pain level and what joints were hurting at 4 specific times each day, fatigue level at the times she recorded her pain levels, activity level for the day and she had a standing order that on her "horrible" days she could get blood work done without having her PCP see her. Finally got the 2 positive ANA and 2 C3 complement tests that were in the toilet to warrant a rheumatology consult. More testing after waiting 4 months for a rheumatology consult. Every abnormal test result would result in different tests being ordered so take it as a good sign that your daughter's rheumatologist is still doing more testing.

I believe I run a low temperature normally too and feel feverish at temps that are not traditionally considered fevers. I have often wondered if other people with lupus had a similar experience.

MammaPooh said:

Someone asked if she had a fever....Over the last few months she has thought she had a fever, but it has never registered above 99.0. I suggested she take her temp at times when she didn't feel feverish, particularly in the morning. My temp tends to run low. She's now established that her temp normally runs about 97.4. So, in my opinion, and hers, yes, she's had a low fever. I've never had a doctor before that recognized that normal can be significantly lower than 98.6 so that when it is 98.8, for example, it is really a degree of fever for that person. So we'll see what this new doctor thinks. Also this pediatric rheumatologist we were able to get in with is an osteopath. Does anyone have any experience with osteopaths?

This is my first reply. I hope it’s in the right spot.

My reumy did an ADNA test and that one confirmed the lupus. I’m no expert yet, but I believe this is a more thorough test than ANA. hope someone can confirm this. But it’s my case.

My heart goes out to you❤️ Our daughters sound very much alike.