After months of chasing down records and sending them to Hopkins, flying 1200 miles one way, I left there without even a blood test!

Since I came home, more testing was done on me and I have an ANA of 1:1280, (still negative on SSA, and all the specific tests). I have an elevated CD4+ count. The docs here are continuing to work on what is going on with me.

I wish I had taken my money and flown to the Bahama's not to Hopkins Sjogren's clinic. Now perhaps they have a new doctor there now at that clinic...Hopkins is excellent. If they want to fly me out and pay my bill and work me up, fine, but until then, I consider my trip out there a freaking waste of money. I brought along a slide of my salivary gland, with the pathology report, which was shoved in my face by their doctor 'very busy, have other patients to see'. That slide sat in their pathology lab for several months, while I am thinking it is being read. It was not until I inquired, was I told they did not have the original report, and could not read it. Well, of course, they did not have the original report....it was almost shoved up my nostril. I requested it back, and it did come back, so some one does know how to use the mail service there.

From what I have read of what other members got at Mayo, it was at least a week of testing. Make sure you go some where that has an autonomic testing center.

That said, the new trend in autoimmune diagnosing IS, if you do not have the specific disease antibodies, such as for Sjogren's, or scleroderma or the several dozen others, you are simply not diagnosed....or you get the seronegative diagnosis, which depending on which doc you see holds water or does not hold water.

There are many seronegative spondylarthropathies that should be explored. Sarcoidosis does not get its due as far as a possible diagnosis. Sicca Syndrome comes with many, many diseases, including a malfunctioning neuro system. I assume by now they biopsies your minor salivary gland to see if it is inflammed. That can be done nearby and sent to Mayo for reading....or any other place you choose. Mayo read mine.

I think more autoimmune diseases are NOT diagnosed than diagnosed. You get all these abnormal tests and the docs seem to not know what to do. Some of this is due to the treatments being so darn toxic. (Plaquenil is one of the least toxic and did squat for me but make me itch hideously all night). I suppose we could have tried a lower dose. Do your research on the TNF blockers. The key is to find a drug that helps not hurts, and I think the rheums are very aware of this.

It was also helpful for me to have the T Cell panel, which is not a usual test, but it indicated my T lymphocytes were running rampant.

My salivary gland biopsy is full of lymphocytes to the max. It isn't scored. There are more lymphocytes than normal tissue. Gosh, I would like to see my eyes, they are worse.

Once you get diagnosed, your issues are not over....then you have to choose treatments.

It is like being on a merry go round. I hope they find the answer and you can get off.

Which brings me to a new issue I will post on a new thread regarding IVIG....I need a techie to answer this question.