Hi, I am new to this site. I have recently been diagnosed with lupus, or rather the Rheumatologist said that I am at a high risk of having lupus because of my blood work and symptoms.
I tested positive the antibodies with a titer of 1:160, a nucleolar pattern. My double stranded DNA test came back 45 and my CRP Quantitative is low.
My doctor tried to rule out lupus but said that he can't. At this point he also doesn't want to give me the label either.
I have had joint inflammation and pain (some deformities in my wrists and fingers). Occasionally, especially more recently, I am having twitching muscle spasms that actually cause my arm to jump in bed while I'm sleeping. I have the extreme fatigue and I have two first cousins (sisters) who have the disease. They are actually first cousins twice. Our moms are sisters and our dads are brothers.
I don't have any kind of rashes, but my pain and inflammatin don't seem to go away. Also, how do you or your doctors know if the lupus is affecting your organs? Do all people get the rash and does lupus affect everyone's organs? I'm so confused and to be honest, I don't think of everything to ask when I'm in the doctor's office. I was surprised at the diagnosis and only heard mumbo jumbo coming out of his mouth. Any information you can give me will be appreciated.
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
Thank you for your response. That is all useful information, especially the books in the library.
I do know about the 11 different criteria and I have already had at least 4 of them. There are other symptoms that I didn't know if they were synonymous with lupus, such as my fingertips turning white and my muscles spasming. I did save copies of all my blood work and I am not anemic. All my vitamin levels came back normal, however, in the past 6 months, I did have some blood work that showed I was low in iron (that appears to have fixed itself though).
This is such a difficult thing to go through. It's bad enough knowing that something just isn't right with your body, but then it can takes literally years to get a positive diagnosis. I'm just tired of feeling tired all the time. I'm getting ready to quit my job (substitute teaching) because it's just too stressful and I develop more symptoms after a stressful day. I also volunteer and teach religious education at my church, my kids are in student concil and sports at their schools so there are always activities that we have to attend as well as band concerts, PTA activities to help with, etc.
We live a very busy lifestyle (It's Vegas), but I'm finding it more and more difficult to just do what needs to get done.
Thanks again and best wishes on dealing with your illness.............