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kaylama
@kaylama

Posts: 1
Joined: Oct 03, 2017

Possible lupus

Posted by @kaylama, Oct 3, 2017

I’m 15 almost 16 and have my first ever rheumatologist appointment tomorrow. I am so nervous but I just want a diagnosis already! I have a ton of symptoms of SLE Lupus and I just want answers…any advice? I am really stressed about my illness and chronic pain/ my appointment

REPLY

Hello @kaylama, welcome to Mayo Connect. We are really happy you found us. Connect is a great place to ask questions and learn what other Connect members with similar health concerns have done for treatments. Here are two discussions that may be helpful:

Systemic lupus erythematosus (SLE): http://mayocl.in/2r5ZiXg
Tumid Lupus with SLE Symptoms?: http://mayocl.in/2qJpF2Q

@kanaazpereira @seesawer @kdubois @sandpiper09 @jewel8888 do you have any thoughts to share with @kaylama

I have no medical training or background but can share one piece of advice – keep asking questions and learn as much as you can about your health problems. It will help you ask the doctor better questions – it will help your doctor help you.

John

Hi @kaylama,

Welcome! I can understand your worry, but the best thing to do would be to get a good night’s rest, and please try not to stress since that in itself could trigger a flare-up!

Here’s a Mayo Clinic webpage about “Preparing for your Appointment” http://www.mayoclinic.org/diseases-conditions/lupus/basics/preparing-for-your-appointment/con-20019676
I’ve also copied a few details below, for your convenience:

Before your appointment, you may want to write a list of answers to the following questions:
– When did your symptoms begin? Do they come and go?
– Does anything seem to trigger your symptoms?
– Have your parents or siblings had lupus or other autoimmune disorders?
– What medications and supplements do you take regularly?

You may also want to write down questions to ask your doctor, such as:
– What are the possible causes of my symptoms or condition?
– What tests do you recommend?
– If these tests don’t pinpoint the cause of my symptoms, what additional tests might I need?
– Are there any treatments or lifestyle changes that might help my symptoms now?
– Do I need to follow any restrictions while we’re seeking a diagnosis?

While we wait for the other members that John tagged, (and I know this may be hard to do), I’d sincerely encourage you to be patient, because lupus can mimic so many other conditions, and your doctor may need to rule out other illnesses before giving a firm diagnosis.

@kaylama, you sound like a lovely young lady, and we look forward to getting to know you. If you wish, do update us about your appointment, and please let us know if you have any questions; we’re listening.

Hi @kaylama,

I hope your appointment went well, and you were able to get some answers. Please let us know if you have any questions or concerns; we’d love to hear back from you.

Hi, I hope your visit went ok and you received some answers to your questions. Lupus is so frustrating a condition. My daughter was 17 when she was told she had Lyme’s disease, (no lab proof) and was treated with IV antibiotics and missed a year of school. In her twenties, all her docs figured it was the beginning of her disease of lupus. She continues to live with lupus today as do I but not nearly as bad as she does.
Don’t be shy with your doctors. Be your own medical advocate. Research on the internet. Knock on all the doors you can (metaphorically).
Best of luck.
Dianne

@kaylama I want to add just a couple things. First, no one has as much at stake in this as you do, so take on much of the load of knowledge as you can. Some of the best knowledge is available in videos from Mayo and other centers. Same with books and papers from the centers, and from National Institutes of Health. Study. Learn. Act. Push. (SLAP) Second, occasionally you will run across some things that just seem wildly out of place, but might have an answer. For instance, I think I remember that Lupus can be part of a Protein disorder. So have your doctor check that by starting with the Mayo/Bindings Serum Free Light Chain Assay. If your answer comes back showing, oh, say, about 1.0 mg per deciliter of serum protein, at your age that is a red flag, I understand. But it is simple, easy and extremely accurate. Anyway, push your doctors. They will be tempted to try to convince you that you are not ill, but don’t let them get away with that. They should be acting as a prosecutor toward your disorders, not a defense attorney for the disorders. There is nothing worth saving the Lupus for posterity.

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