My mom finally getting lupus diagnosis

After bugging my mom for about two years now to get tested for lupus, she got sick enough she finally remembered to ask the doc to test her. Even after months on Entocort, she still had a high ANA. I knew she would. She's allergic to everything. She has something called Microscopic Colitis, which is supposedly colitis only able to be seen under a microscope. I thought it was all like that. I don't know. They are sending her to a lupus specialist now that her immune system is so hopelessly broken. If only they had done this earlier.  She has been so sick, I'm just glad there may be some help for her to get her life back and feel better. She's had all the typical stuff, pleurisy, gi, liver, bladder, possibly kidneys and heart now, she is really puffy, and diabetes like condition and an inoperable pancreatic tumor that seems to be benign, she's had it for years now and it hasn't changed or caused major problems. I'm so glad that she may be able to get on something besides steroids for a while, even plaquenil because she keeps getting sick and has zero energy. She has bad neuropathy too.

I hope that she gets a good doc who looks at everything and figures out what is wrong so she can get better and we can know what is going on. Not only do I have problems but more importantly, my kids and my sister's kids have problems.

I really want her to get a TB test too. I know she doesn't want to get one because she doesn't want to take the medicine beause I've had trouble on it. She wouldn't though because her liver isn't bad like mine. My sister also had TB and went through the medicine. So there's two in close family. She needs to get tested. Anyway, I asked her if she'd been tested recently and she said "yes" and I asked her when and she said, "Oh, about 1973..." That's my mom. She's sweet, but I think she's scared. At least she got the lupus part done. I'm so proud of her. She has been so weak and foggy. And she's been on steroids for months now because her gi stuff just won't let up.

well, thanks for listening. I love you all here and wish you the best. I just don't want to lose my mom, I love her so much and she is just so sick, one thing after the other. She deserves a break.

Remember that a lupus-aware rheumatologist is the correct doctor to diagnios lupus and other auto-immune diseases -- regular "primary care" doctors just don't have the right training & experiance to id it. Best way to get to the right rheumy is to check lupus.org for the chapter nearest you -- then see what rhumies are active on their board of directors -- those are the folks who are interested in lupus and keep up to date with treatments & options. Hope you get some appropriate treatment soon.

Marji, I am sorry to hear of your mom's health problems, maybe she is on the road to getting proper dx's and treatment plan and she will feel better soon! You and your family are in my thoughts and prayers. Please keep us updated on how she is improving! Take care

Well. now her primary care docs on a return visit to get the referral seem to have amnesia and now say her labs, while just above normal--even inflammatory markers--have now decided they WILL NOT refer her to a rheumatologist. They seem to have forgotten that her levels were elevated during months on Entocort for colitis, so imagine what theyd be normally. They won't even refer her for her bad arthritis. I don't know whether the rheumie refused to see her, or the docs just changed their mind. I told her to try to go. She really needs it. She can't stay on steroids forever and her immune system is going. I wish she had better care, but she won't leave her primary care docs and they have not helped her at all.