So I had my appointment with my regular doctor today to go over my latest labs. My ANA numbers were actually down (in the middle of a flare) and based on the labs my doctor thinks it's not Lupus. She does think there is some kind of inflammation going on...but I think she is leaning more towards dietary stuff right now. So I have an appointment next week to meet with a nutritionist and set up an Elimination Diet. And I go tomorrow for some more labs, but I think it's more of a glucose, thyroid, and other stuff ... she ordered quite a bit and a lot of them I didn't recognize. Oh, and we're also doing a test for heavy metals. Once the labs are back, she's going to give me a referral to a neurologist for the weird stuff going on with my hand and the speech issues.
So I wanted to say thank you; this group has been really great for answers & support. I guess I'll be leaving...still looking for answers, though. In a way I feel more confused than before, but maybe someday I'll have an idea what's going on.
My labs too had been up and down, hither and yon. First diagnosis was reactive arthritis, then inflammatory arthritis (RA according to research) and now the Lupus diagnosis. All in the last 3-4 months. Frankly I’m confused too. All I know for absolute certain is I have an autoimmune disease but I don’t believe they know for sure which label to put on me quite yet. I wish you all the very best on this crazy roller coaster and hope your doctors are finally on the right road with you. Best of luck to you.
What confused me was she said there's definitely something going on with inflammation, but she didn't think it was like a disease. I thought all the inflammation stuff was related to some kind of disorder?
It sounds like you very well may still have Lupus with other problems thrown in. Most of us end up with many diagnoses. An ANA test does not show inflammation. That can be found with a sed-rate also called ESR. An even better test showing inflammation is the CRP test, that stands for C-Reactive Protein test. ANA tests tend to fluctuate anyway. They just indicate autoimmune disease but do not give any details into which one of hundreds that might be. Check the Lupus Foundation of America at Lupus dot org for more information on the criteria for diagnosing Lupus. Good luck to you. Hugs and prayers too.
Sheri, thank you :) that's actually very helpful ... I will call my doctor and ask if they did that test yet. When I was at the hospital yesterday, I found out that I can sign up and be able to view all my lab results online so that I think will be helpful as well!
here's a link to my discussion that has my lab results ... these are from August I believe. Whichever test that has the 7.2 or 7-something level, that's the one we just re-did and it was 5-something. So in the middle of feeling absolutely horrible, this number actually went down.
My nephew got sick with some stomach thing, never identified, And his freshman year of college. He also started having really severe thyroid problems at the same time. Six years later, after graduating from college and living at home two years, it got so bad he started looking into food allergies. One day the allergist asked to see the Kleenex wilth which he had just blown his nose, and asked how long he’d had green snot. Turned out he didn’t know he wasn’t supposed to have green stuff coming out of his nose, and she put him on an antibiotic that within two days allowed him to start eating again like anybody else. When I went to the same university, they handed out antibiotics for everything, and now it’s rarely prescribed. So many things can make people sick, and sometimes it just hard to find. I hope they figure it out soon.
I got an email last night with my latest labs, and after looking them over myself (won't see dr for 2 mos) I think everything looks pretty much in the normal ranges except for just a few ... and the ones that seem off a little are things like iron, low sodium, and low Alkaline Phosphatase. Which make me think perhaps I should be looking at the liver?
Don't worry about a low ALP. That's a good thing since ALP is mainly a liver enzyme. It's always good to look up these tests on the web. There are many resources that have great information like WebMD and the like. Knowledge is power.
For example, I had some serious liver symptoms when all this autoimmune stuff reared its head. The blood tests for liver enzymes were negative. The only elevation was the bilirubin (skin was sl. yellow) a dead give away that it was a liver problem. A liver biopsy confirmed autoimmune hepatitis. That's not to say you have or don't have a autoimmune response going on in your body or that it's a serious as mine has been.
Same scenario with lupus, under the radar.
What I'm trying to say is that the doc needs to be a good clinician to put together what's going on (tests results & trends vs symptoms), that's why those rheumys get paid the big bucks..