Winic1, I have been reading along here and hope that it is OK if I make a suggestion.

One way of helping to diagnose auto-immune diseases like RA and SLE is to run an anti-nuclear antibody (ANA) test.

There are two parts to it. The first is to measure the levels of ANA in your serum. The second is to observe the staining pattern of your ANA in the nuclei of cells from a human cell line; different auto-immune diseases tend to show different staining patterns.

Neither part of an ANA test is definitive (both false positives and false negatives are known) but if your serum ANA levels are abnormally high and you have a characteristic staining pattern then more detailed investigations would be a good idea.

It was the ANA that was barely positive, and the staining patterns showed some stuff. This was in the blood tests run after there was that weirdly high SED rate. First rheumatologist I was sent to said no, it didn't count.

SED rates have been in normal range since then. Don't think they've run another ANA, if they did, it was normal. My bloodwork is always normal, except for the abnormally high number of red blood cells of abnormally small size--the thalassemia minor.

My bloodwork says I'm healthy as a horse. But the damn horse keeps trampling all over me.

Not

Can you dig up that ANA?

A positive ANA is not nothing, along with a sed rate of 130! Good grief. Don't see that rheumatologist again.

The thing with lupus is that it can come and go, depending upon exacerbating factors. Some people have signs all the time though. Test results can also be positive and then negative. Those tests are best to do when someone is in a flare. I volunteered for the locus lupus foundation, which is why I got to know the disease so well. Well, that and a couple docs thought for a number of years that I might have it (don't).

You can do things with your diet that would help inflammation. Are you interested, or have you already made adjustments?

Thanks for bringing that up, Kiwi. I know she mentioned that before but it's a few posts back!

Get those results and share if you can! You need a very good rheumatologist.

Annie

I remember it was barely positive, like if the limit of normal is 1:40, then mine was 1:80, whatever one step past normal is. There were two staining patterns noted and described pretty sure one was speckled and maybe some nucleolar also? I think that's what I remember, having just now looked up the names to jog my mind.

The high SED rate and the borderline ANA came at different times, different rounds of blood tests. I don't think the ANA has been repeated, or else it was just once and was normal that time. Sed rate went back to normal.

Late this spring and summer, everything was just awful, worst ever. No one wanted blood tests. Now it's calmed down somewhat, or I've just gotten used to it and adapted, or I think of it as "absorbed" it, take it as the new normal and reset the scale to "this is zero" and only note or acknowledge pain and/or problems above and beyond where I am now. Will see a different rheumatologist in 4 months (their next available appointment), which will be 7 months after this most recent, worst round of pain and problems. So, who knows what, if anything, will be going on then, and I expect to get turfed again.

I would be interested in hearing the diet changes. Not really capable of looking things up myself right now, with the ongoing and progressive eye problems. Places like this site, I can blow up the screen really large to read, it works. (hold ctrl and scroll up to enlarge, scroll down to shrink it back down, or hold ctrl and hit + repeatedly to enlarge, - repeatedly to bring it back down, and ctrl 0 (zero) to get back to normal when you've gone up and down so much you are lost) But many sites don't work well with being enlarged, have bad fonts and/or colors, are difficult to navigate because if I don't know where the buttons/clicks are I have to look around for them and looking around doesn't work hardly at all for me right now, and then reading new info with all the rest of the difficulties it just doesn't "go in" (think of it as trying to hear complex directions while in a very noisy, crowded, busy room where you are being jostled around while trying to hear the directions shouted over the noise of everyone else shouting directions at each other) and I have to go over it over and over but that makes eyes and head hurt ....

So anyway, yes, if you could give me some simple guidelines to start with, that would be great.

I'm having a really hectic week, so I can't go into diet right now (will soon).

You have a primary doctor, right? Have they done a urinalysis lately? If you have symptoms, having a UA can be revealing if you have lupus or other connective tissue diseases.

Urinalysis Test for Lupus : Physical, Chemical and Microscopic Analysis

If you have rashes on your skin after being exposed to the sun, a dermatologist can do a biopsy.

Is no one really thinking about symptoms here, or what to test for? Doesn't seem like it.

Annie

No, I don't really have a primary doctor. Second to last visit, he just really blew me off, which was a shock because he's never been like that before, not as a doctor and also since we've been with him for 18 years and our daughters went to preschool and kindergarten together, and are in the same high school. Last visit I only went in because they were supposed to follow up on a call from the physiatrist they had sent me to, but rather than tell me anything over the phone I had to go in, and he just said that I was beyond his expertise, beyond anything he could do, and that's why he just keeps sending me to specialists. He made it very clear that he could not, would not, do anything other than send me back out.

I asked him if, on the referrals, instead of saying something like "is it RA?" because then I just get a yes or no answer (and it's "no" because I don't have a positive blood test for anything) he could just say, "figure out what's wrong with her" and he told me "It doesn't work that way."

I have asked the specialists, when I am there, "well, if it isn't MG/RA/Thyroid/whateverthelatest, then what IS it?" and gotten in reply, "I asked to decide if it is X or not, and I say it isn't", end of discussion, end of visit, end of story. Really dysfunctional, restrictive system they are working under, since this last corporation bought the hospital and almost all of the doctors in the area.

So, no, I don't have a primary doctor, not for anything more than a cough or a sore throat. I see my next specialist, rheumatologist again, on December 24, at 2:00pm. If I tried for an appointment with the endocrinologist, it would be a 7-9 month wait, as they are, and have been for several years now, very short-staffed on doctors, because nobody new wants to come work in this area under that corporation. My neurologist isn't very good at all, she is not up to date on MG or much else, and has no interest in getting up to date, but she's the only one who would take a chance on giving me the pyridostigmine, and since it works she's still writing the prescriptions, but told me she won't go over the 5 pills a day, and nothing else. Will NOT discuss any other potential neurological issues, like the eyes or headaches or anything. Not interested.

A year from now I should have moved halfway down the east coast to a new area, and just have to hang on until then, as we are counting on there being better doctors in the new area. Can't be any worse.

Do you have an urgent care facility? Work the system. I don't encourage not being honest, but you could go in on off hours and say you think you might have a bladder infection. They have to run a UA then.

December is not too far away, but this is ridiculous healthcare. I'm sorry.

Annie