Daughter recently diagnosed with Lupus
My daughter received a Lupus diagnosis recently because of her low platelet counts and enlarged red blood cells, in addition to all of the Lupus markers which were discovered when she went to her primary for feeling light headed and received blood tests. She really didn't have any obvious symptoms other than fatigue and forgetting words/brain fog. About 2 years ago she had pleurisy, which I am assuming was related as well. In fact there were a couple of Lupus markers from that blood test that he primary dismissed as not being worthy of being seen by a rheumatologist for (that's a whole other story!).
We recently went to her 1st rheumatologist appt. and the Dr. said she was presenting mildly. I thought he would have told us what to look for, when to call him, what triggers a flare up, would she even get flare ups (does everyone?), etc., but instead we were given a very small pamphlet, told not to research on the internet and asked to come back in 3 months.
When she went 1st to the hematologist (whom I really liked and was very thorough) he said she would likely have a team of doctors but we were never referred to anyone after seeing the rheumatologist.
So here is what I am wondering...should she go to another rheumatologist? Is there more she needs to know? Should she see a cardiologist or other doctor as well? Maybe not if case is mild?
Any info you can share would be appreciated.
I think it’s great that you are such a big advocate for your daughter
. It sounds like after she was diagnosed with lupus, neither of you were given a lot of information about what to expect. Whether you should get a new rheumatologist or not, that is up to you and your daughter. It might be helpful to ask yourself what you’re looking for in a rheumatologist. Some people might look for doctors who listen to their concerns, or people they feel comfortable asking questions to. It sounds like some of the biggest drawbacks of your current rheumatologist are that they didn’t listen, and they didn’t answer any of your questions. By figuring out what you hope to get from your rheumatologist, it might be easier to decide if you want to stay with the one you have now.
In regard to some of your questions about triggers and flares. Our website has a lot of information about these topics! If you’re ever looking for something specific, you can click the magnifying glass symbol at the top left of your screen to search our website for what you’re looking for. For example, if you’re looking for triggers, searching “triggers” will show you all articles we have about triggers. You can also click the 3 bars next to the magnify glass to see our menu. It will say things like “What is lupus?” or “Symptoms”. That can help you navigate around our website to different topics.
To get you started, we have a lot of articles on triggers and flares. You can read about what causes lupus flares, and how to identify sources of flares in this article here: https://lupus.net/triggers-flares
Another great place to start is this article about how our advocate writers deal with their flares. You can find that article here: https://lupus.net/living/flares-coping
I hope that this helps you feel more comfortable navigating our site. Please let us know if you have any questions or need help. I’m glad that you were able to find our community!
- Cody (Community Moderator)Thank you
