Re: Questions regarding Lupus
Tricia, hello & welcome! I'm just a patient, obviously, but following are a few things I've read. To learn a lot more, you should look in your local library for two excellent lupus hardcover authors. One is Dr. Daniel Wallace, and the other is Dr. Robert Lahita.
Rashes: I've seen figures of 70% & 75% or so of lupus patients have rashes at some point. There are multiple rashes. The most common ones are butterfly, a/k/a malar (facial); and discoid (coin-shaped that tend to scar &/or depigment). Other lupus-specific rashes include subacute cutaneous, annular form (targetlike circles); subacute cutaneous, papulosquamous (looks something like psoriasis but isn't); bullous (raised fluid-fileld blisters); tumid; etc.
Major organ involvement: On that, I've also seen varying estimates---maybe 50% or so, is one I remember seeing. Doctors follow the symptoms you report or that they find, and they tend to do regular bloodwork to constantly monitor for markers. Also, urine tests are usually done regularly, to check for protein that can indicate kidney issues, in which case further kidney tests would be done, or a consult with a nephrologist set up. Chest pain---well, maybe he/she would doublecheck heart & lungs, and/or send you to a cardiologist or pulmonologist. Etc.
Doctors use pre-established, accepted criteria to Dx lupus. You'll find these on a "sticky post" ( = permanent info post) at the top of the thread list. Generally you must meet 4 or more to sustain a Dx of systemic lupus (SLE); but there are variants called "subsets" for which you may meet fewer. Once each is met, think of checking it off permanently, in indelible ink.
It can take a long while for some people to meet multiple criteria, while others meet them quickly. Like you, I met some, then went onto "hold"; and my GP wouldn't make the call, as he simply didn't have enough to go on.
About your fatigue: do you ask for & keep copies of your standard bloodwork? I ask because anemia is common, and there are various forms. For me, it was B-12 & Folate that kept dropping, and I felt horribly tired.
Just curious: is your dr. a rheumatologist? They're the specialists best versed in lupus & its close cousins.
It is SUCH a complex subject that even doctors who have it down cold can't begin to explain it in the brief time they spend with us. I really think it pays to read, so you'll ask better questions & follow your doctor better. That said, nothing is more important than finding & staying with a doctor who knows his/her stuff.
I hope this helps some. I hope you keep posting, as so many people here have seen different aspects & have unique info to share. With my best wishes to you, sincerely, Vee