I have been suffering for 18 months with unexplained severe abdominal pain (upper right quadron under rib cage), pain and weakness in my joints, muscles, etc. Headaches, fatigue, insomnia, constipation and times and severe diahrea at other times. I have had umpteen x-rays, contrast CT scans, upper G.I., ultra sound, endoscopy, ERCP, lab work, etc. I still have no diagnosis and getting severely depressed. I have recently started seeing another doctor who is testing me for Lupus, MS, Acute Intermittent Poryphria, etc. Does this sound like the symptoms of Lupus?

LilFrog, Hi & welcome. I'm only a patient. But that said, it strikes me that the things you cite are in that big ugly ballpark of "maybe". That's the huge diagnostic challenge of lupus: that so many of its symptoms & test results are also seen in OTHER illnesses, too.

Have you read the "sticky posts" (permanent info posts) at the top of the thread list? Look at the ACR diagnostic criteria. You'll see that generally you must meet at least 4 of the 11, at some time, not necessarily all at once, to be Dx'ed with *systemic* lupus. For lesser types (discoid, subacute cutaneous, etc.), you may meet fewer than 4.

Things go easier if a problem is found that occurs ONLY in lupus. Examples of these are anti-ds-DNA; anti-Sm; or a rash proven by biopsy to be lupus-specific. Here are some lupus-specific rashes: facial butterfly; SCLE, which has two forms, both nonscarring; and discoid scarring.

When your test results come back, you should ask for copies for your files. Hopefully, he (she?) ran ALL POSSIBLE lupus blood tests right off the bat, as opposed to just the ANA, as it's only a threshold test & can't prove a thing by itself. (And note that of the ACR criteria, only *some* have to do with bloodwork.) Hopefully you were asked to give a LIFETIME medical history, to enable the dr. to assess how many of the ACR criteria you've ever met.

I had everything you cite for many years---plus urinary problems, anemia, and recurrent nonscarring arm/torso rashes. But my rashes were the only problem that could ONLY happen in lupus. While I was also positive for anti-Ro, that's seen in lupus &/or Sjogren's syndrome. I also had multiple colonoscopies. (Ugh.) No signs of inflammatory bowel disease, like ulcerative colitis or Crohn's, were ever found.

Just curious: what's "ERCP"?

When do you expect to get results back? I hope you post more when you have the time. Best wishes & hang in there! Bye. Sincerely, Vee

Hi Lilfrog,

Did they perform a HIDA scan with an enzyme injection? The reason I ask this is that if you are having upper right quadrant pain, it may possibly relate to your gallbladder.

Last year I went through two months of tests (CT scans with contrast, MRCP, Ultrasound, X-rays, small bowel series, colonoscopy, endoscopy, etc. with no conclusions. I received a HIDA scan without the enzyme injection and had to wait another month to get the test again with the enzyme injection because my primary Gastroenterologist hadn't ordered the enzyme. A second gastroenterolgist consulting with my doctor ordered a second second HIDA scan with an enzyme injection, it was determined that I had biliary dyskenisia (the bile duct won't function properly, no stones). This was some how related to my IBS and Fibromyalgia. I ended up having my gall bladder removed and have been treated for my IBS and am feeling much better.

At the same time I started exhibiting symptoms of Lupus and ended up having an ANA of 1:640, positive rheumatoid factor, positive Anti-La and Anti-Ro, high sed rate, low grade fevers, mouth ulcers, hair thinning, bad joint pain, etc., major fatigue, headaches, etc. The tests would be worth it along with the complete medical history that Vee mentioned.

I hope you can get some answers soon!

I am not sure how to post but I am desperate need of help. I am hopefully going to the Mayo Clinic for help. I recently saw my doctor for throbbing pains in my legs and numbness in the arm and my sed rate was first 61 then he took it 15 days later at its 81. I was tested for arthritis but that came negative. I am so tired all the time, I could be walking and my sister says my face turns beat red and I start sweating like I just took a shower. My vision is getting worse by the day but I think the doctor tested me for lupus and it came negative.
Does anyone have a clue what this could be?:confused:

Actually I had my gall bladder removed 9 years ago. The ERCP is what my previous gastro doctor did to cut the little muscle in my bile duct open and implanted a stent to make sure I had no blockages and prevent any in the future. Well, it didn't help! LOL
However, I had a doctor's appointment tonight and my FANA blood work came out positive. So, they doctor is now telling me that I have some sort of auto immune disease, just not positive on which one yet. So, he has ordered some more blood work. According to him it looks like Lupus, Rheumatoid Arthritis, Scleroderma, Sjogrens Syndrome or Felty's Syndrome. Most of which I've never heard of! So, Thank you all so much for your posts.
I will keep you all updated on my results.
Thanks Again!

Ashie, hi. I *think* the deal with rheumatoid arthritis is something like that with lupus: that to diagnose it, you need to meet, say, 4 of 6 criteria (or something like that). I also think the RF test isn't necessarily positive in 100% of cases of RA. BUT, RA is only one kind of arthritis, and there are (I think) over 100 kinds!

In a similar vein, alas, there's no single test for systemic lupus. The three "sticky posts" (permanent info posts) at the top of the thread list provide basic info---have you read these yet? Look at the one with diagnostic criteria. To be Dx'ed with SLE, you must meet at least 4 of 11, but not necessarily at the same time. And you'll see that some criteria are lab results, while others are symptoms.

The criteria include only two autoantibodies (anti-ds-DNA and anti-Sm) that are so specific to lupus that, when found, lupus is pretty much presumed. However, there are at least 14 or so OTHER antibodies & complement findings seen in lupus...

...meaning, a doctor must order many specialized blood tests, and then know how to interpret the results. But I hope your doctor looks at EVERYTHING. (That would include heart & circulatory, thyroid, anemia, hormonal changes, etc.) And I agree that your smartest move is just what you say: see a really good diagnostician.

I hope you post more when you can. FYI, you can start your own thread by clicking the NEW THREAD button & typing in your own title, if you want. However you do it, we'll be watching for your news. Best wishes, Vee

I am no doctor, however, I would suggest going to a cardiologist ASAP. Don't want to try to scare you, but that really sounds like a heart issue. Best of luck to you!
God Bless

I deeply apologize, however, I am new to the site and clicked on threads at the top of the page and can't seem to find the diagnostic criteria page you were speaking of. I would love to be able to look over that information to see exactly how many matches in the criteria that I meet. Please help me find that information!
Thanks again so very much for your help.
Terri

Terri, look for the threads with padlock icons in the left margin. Those are the "sticky posts". Bye, V.