Thanks for your wealth of ideas and knowledge, Annie.

Yes, they looked at lupus. I had positive ANA, high titers, speckled pattern, photosensitivity (eyes swelled shut in sun), malar rash in sun, joint pains, etc. etc. They treated me with prednisone, but felt that I didn't meet enough of the criteria for an official dx.

Since then, we've gone back and forth. I was diagnosed for a while, but then undiagnosed. Rheumatologists feel like I'm too healthy for treatment and frankly, I don't want to do prednisone.

I saw a rheumy at Mayo, but everyone was looking at me from the perspective of the heart/autonomic nervous system situation, so I'm not sure the right lens was used. Antibody test results came back after I returned home. I have positive SSB, but ANA (which has been positive and highly so for 20 years) came back negative. Rheumy recommended no further action at this time.

I don't have a local rheumy because the one I went to just kept saying he didn't know what was wrong aside from the fact that it is autoimmune. And, despite all the challenges, I normally maintain a pretty normal life, come across very functional, and just naturally adapt to many of the symptoms except when I get into a crisis period (like now). I stay in good shape and I am young, and I always look fine, so it's hard to get the help I need.

I haven't heard of polymositis, but will look into it. I don't get rashes often now and the biopsy they did way back when showed only hives.

Yes, a GI specialist was very involved during my period of GI bleeding. (I still have small ones from time to time.) But they had no explanation. I went through numerous colonoscopies, an endoscopy, exploratory abdominal surgery (after a test showed meckel's diverticulum - turns out there wasn't one), and a pill cam. Colonoscopy revealed large polyps, which were not associated with the bleeds and, in fact, the worst bleed occurred some time after they were removed. Endoscopy revealed hiatal hernia. surgery showed nothing, but caused a lot of complications and numerous hospitalizations - no more surgery for me. And pill cam showed nothing.

Yes, I am highly positive. That with my highly positive anti-beta II, glycoprotein I and episodes that were diagnosed as TIAs led to my diagnosis of antiphospholipid syndrome and life-long coumadin therapy.

In fairness to the Mayo doctors (who I think did a good job based on the information they had), I was accepted by them due to my heart/autonomic nervous system issues. During fainting spells, my bp was through the floor, so it made sense that these episodes were caused by these conditions. However, while I was waiting for the Mayo appointment, I had a pacemaker readjustment which I think really helped and then I had to stop my medication for the appointment. The medication keeps my heart rate lower, but this also lowers my bp. After being off the medication for a little while, my BP rebounded, so things had changed prior to testing. I would have thought that the improvement in BP would have been sufficient to stop the episodes, but since I've been home, I've continued to have problems. So Mayo really didn't have all the information. And neither did I.

I have good days and less good days. I get fatigued getting ready to go out and often become sick to my stomach when standing and doing my hair, for example. Showers exhaust me and I don't generally take hot showers. Mayo suggested I take showers only in the evening so as not to expend my morning energy too early. This might allow me to go back to commuting to work (which I'm scheduled to do next week - I've been telecommuting for the last six weeks). Sometimes I get so tired just sitting at my computer working that I have to lie down. But I generally don't sleep. My body just needs to rest, I guess.

Vitamin D has been consistently low, but I've been working on it and it just made it up into normal range. I'm not sure about the other two. will have to look into them.

Normally yes. I get it really bad when I lie on either of my sides (like when I'm reading in bed before I go to sleep). I always find myself closing one eye so I can read. One eye has perfect vision, the other has better than perfect vision. But I can close either eye and see more clearly than with both open. I don't have constant double vision. It comes and goes and tends to be worse in the evenings and when I am tired.

No. When I started having serious eye trouble at the beginning of this year, I thought I needed glasses, so I just went to an optometrist. They didn't find anything. Said I could get a prescription for the very lowest strength of reading glasses, but since the vision fluctuates so much, that doesn't make much sense to me.

I'm not sure. Will have to look through my 4 inch binder of medical records to see.

Thanks, Annie. I know I need more doctoring, but I feel at a loss as to which doctor to approach. My family dr. is basically a stop gap for the moment because my real (and awesome) doctor moved and I haven't found a good replacement yet. This guy seems willing to work with me a bit, but I don't trust him much. And he thinks my problem is high epstein-barr titers, which he wants to treat with IVIG possibly. I can't deny that they're high, but from what I read, it seems unlikely I currently have active disease. Nonetheless, I'm pursuing that, too, at the moment.

And if it's MG, or other auto-immune, IVIG might really help, so if it comes to that, I probably won't turn it down...

Anyway, thanks again for everything!

Jenny