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justamom1999 01-18-2013 08:00 PM

How Can I Find Out If I Have Lupus?
I have been having issues for a long time. I have periods of time when I feel better...then I start feeling real bad. I am right now dealing with chest pain and major abdominal swelling. My elbows and knees hurt. I have a slight rash on my cheeks and nose. My great grandma had lupus and my cousin has it also. So it does run in my family. I have had testing done...CT scans and ultrasounds of my abdomen. I do have some lesions on my liver that will be checked again in April. I also had colon polyps removed a little over a year ago and will be having a colonoscopy next month. I had my gall bladder removed in October of 2011 because it had quit working. I don't know if any of this even matters. I feel like I have symptoms of lupus. I've heard it's very hard to diagnose. Any information would be much appreciated. Thank you.

VeeJ 01-20-2013 06:21 AM

Re: How Can I Find Out If I Have Lupus?
Hello & welcome! I'm only a patient, so please read in that light. For lupus, the best bet is always a rheumatologist, who would evaluate you for the ACR (Am. College of Rheumatology) criteria. Look for those in the "sticky post" (permanent info post) above the user threads. Generally, but not always, you must meet 4 or more to sustain a Dx of systemic lupus. Once a criterion is met, envision checking it off permanently, like you've used indelible ink.

The stickies are a good place to start because they're so basic. You'll also see ones that discuss skin rashes, "alternative criteria", further reading resources, and APS (a blood clotting disorder often seen with lupus).

Even though there's lupus in your family doesn't guarantee you're headed there. I think while autoimmunity tends to run in families, some escape entirely and others may get some *different* AI. For example, in my family, including first cousins, there's lupus (me), Hashimoto's thyroiditis (sis), Ulcerative Colitis (1st cousin), and Type 1 diabetes (1st cousin).

Offhand---but I'm no doctor!---your facial rash could be important, but only a doctor could say if it's a lupus malar rash. Ditto with joint pain: the problem there is that joint pain is seen in many conditions, including other AI's, in hypothyroidism, in run-of-the-mill arthritis, etc. For other criteria, you'd need specialized blood tests & urinalysis. And for criteria that are more like "symptoms", you'd need a careful lifetime medical history taken.

Re: liver, I have a friend with multiple liver hemangiomas, found after her liver values were slightly elevated. Were your liver values off?

Re: abdominal swelling, I've heard of it in people with PCOS, also with GI autoimmunes (Celiac, Crohn's, and Ulcerative Colitis)---but I bet there are MANY other possibilties, too. (I had years of GI problems, but colonoscopies, upper/lower GI series, blood labs, etc. ruled out the inflammatory bowel diseases and Celiac.)

Anyway, I hope this gives you a head start. We'll look forward to your next post: we have wonderful people here with a wide range of experience to share, so I'm glad you found us. Bye for now, with warm wishes, Vee

justamom1999 01-21-2013 10:01 AM

Re: How Can I Find Out If I Have Lupus?
Thank you so much for all the information! I have had a full hysterectomy so I know the abdominal swelling is not PCOS. The liver lesions were found during an abdominal ultrasound and CT scan. My liver ensymes have been elevated before, but that is not why my gastro ordered the ultrasound. She just ordered them as part of the initial testing she wanted to do. I have had so many test done and it seems like I never get any answers and it just gets aggravating. I'm glad I found this site too. Thank you very much for your response.

VeeJ 01-21-2013 01:20 PM

Re: How Can I Find Out If I Have Lupus?
Hi. After you study the stickies, you could try your local library. Reading helped me tremendously. I took everything my early doctors said at face value (silly me). Once I read & saw more doctors, I'd find myself thinking, Gee, that one asked none of the right questions (etc.). So I decided to try a teaching hospital rheumie, and with him, I knew immediately that I was good hands because he was so "by the book".

Those "alternative criteria" knocked my socks off! I met almost all of them, starting young. My lupus had stayed fairly mild, so in one way, that was great. Yet, conversely, that made me harder to diagnose. The more severe it is, the easier it is to diagnose, as a general rule.

Anyway, I hope your upcoming GI test & liver followup help your doctors to rule more things in/out. Drop a line whenever the mood strikes. Wishing you more clarity soon & better days ahead! My best, Vee

justamom1999 01-21-2013 01:51 PM

Re: How Can I Find Out If I Have Lupus?
Thanks so much. For the time being I guess I'll just wait and see what we find out with the colonoscopy and go from there. I really appreciate all the info you have given me. I too have taken everything the doctors have told me at face's just so hard to get them to understand that I don't feel good and I know there has got to be a reason for it. Thank you for your time.

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