Hi Mandy . . . welcome to the forum sis,
Oh how awefull!! To have lost two family members to Lupus. Hugs for you Mandy.
The last link in my signature is "Lupus chapter Locator". Click on that link and find the phone number for the Lupus Foundation of America (LFA) chapter nearest you and call them. They'll send you a doctor referral list for your area.
Then prepare very carefully for your Dr. visit. You really need a better symptom list to help the doctor figure things out. It would great if you could get in to see a rheumatologist, but most people need a referral from their primary care physician (pcp) first. Another link in my signature "Lupus Resources" has several posts in it that might help you. Go down to a post which contains tips for new members . . . LOTS of good stuff there. And in the same link, the last post is a form for a sheet you should prepare before you go to a doctor's appointment. Spend LOTS of time making a clear list of your symptoms. Not a bunch of paragraphs but a list. If you read a lot here and in the other links in my signature, you may find that you have more symptoms that you've just been ignoring or didn't realize were part of this.
Lupus can attack most any organ and some here do have some heart issues as a result. Some have problems with the mitro valve. Lupus will commonly attack the sack around the heart too.
The blood work can go positive and then negative again, so they really can't "rule out" lupus. Many doctors don't even realize this. When you have the rash, take pictures and bring them with you to your Dr. appt.
In the lupus.org website (in my signature), you will find a page of information about
symptoms and one about
diagnosis that might answer some of your questions too.
Hang in there!! It can take a long time to actually figure out what is wrong . . . so don't give up.
You found a friendly bunch of people here. I'm sure you'll get more responses.
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator