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[QUOTE=VeeJ;5435722]Hi and welcome. I'm so sorry to read about your ongoing issues, which sound pretty similar to what mine used to be. I had problems from early childhood, sharply increasing at 13 when hormone levels increased (elevated sed rate, low-grade fever, joint pain & miserable pain along long bones, like shins, also depressed white blood cell count), more in mid-20's (miserable GI problems started), migraines from early 30's on, photosensitive rashes starting in late 30's, hair loss, weight loss, ETC. Yet no answers, no matter how hard I tried with gastroenterologists, dermatologists, and GP's.

One fine day I found pics of what my rash appeared to be (well, in my august opinion anyway:D) and took myself to a teaching hospital rheumatologist.

My ANA was never positive. This new doctor tested for all the subtypes ANYWAY and found positive anti-Ro. And for more proof, he sent me to a dermatopathologist for a lupus band test (LBT). It's a deep-punch biopsy & requires local numbing & a few stitches afterward. In the first step of testing, the punch is examined under the microscope to look for tell-tale cellular changes. In the second step, a series of live immunofluorescent stains are applied, to see whether "linear bands" appear (fluoresce). If all five stains create such linear bands, the probability of SLE is > 99%. All five did on my test---on three different punches taken at three different times.

Most interesting things my two specialists told me. It's possible to be positive for anti-Ro but to have a negative ANA: it's a rare presentation of lupus, what they both described as a "subset". How rare? Less than 5% of all lupus dx'es. This rare presentation "favors" women of western European heritage (my family was mostly English, on both sides). My rashes: those were a lupus-specific rash called Subacute Cutaneous Lupus Erythematosus (abbreviated SCLE), the annular (targetlike) form.

Have you read the sticky posts (permanent info posts) located above the thread list? You'll find some good info there, including some excellent books you could find in most libraries that cover some of my key points (anti-Ro in lupus, the Lupus Band test, etc.).

If you DO pursue a skin biopsy, I'd aim for that "LBT" described above.

We'd love to hear more! Meanwhile, thinking of you and sending warm wishes. Don't quit trying, OK?[/QUOTE]


Hi! Thank you so much for your answer!!
Yes, your case indeed sound a lot like mine. :O
I live in Brazil and I havent find any dermatopathologist here in my city >.<
and nothing called lupus band test, but i think i find a laboratory that does what they call "direct immunofluoressence" and in the description they say it can diagnosis lupus. Do you think is the same thing?

I cant find the books here either...

Im trying to schedule with a dermathologist.
Im also going to a gastroenterologist who told me she will ask for a endoscopy with biopsies because she thinks it can be celiac disease oO
Ill let you know!

Thank you soo much. ^-^
I think direct immunofluorescence refers to one method of autoimmune blood labs.

While I do think testing for Celiac* makes sense, the fact that you've had positive results on *multiple* ANA subtypes that are *all* possible in lupus---anti-Ro, anti-La, anti-Sm, and anti-RNP---seems really important. Do you know how high those were---meaning their actual readings for each, including the "reference range" (normal range) for each?

*Celiac can co-exist with other conditions, so no matter what you find out for it, I think you still need to chase down what's going on with anti-Ro, La, Sm, and RNP.

A dermatologist should at least know about the LBT (lupus band test), but look for one who's into medical conditions as opposed to cosmetic procedures. Then the next question would be whether that person is skilled at doing the test (it takes a high degree of proficiency)---or knows a lab that is skilled enough.

Re the books, perhaps a university library or bookstore would stock them?

Keep us posted, OK? Good luck!
[QUOTE=VeeJ;5459767]jessyBR, in no special order, I'd ask more questions, and I'd seriously consider trying the Lyrica.

Timing of your positive ANA. I'm not sure how much it really "counts" that your blood draw that had positive ANA was negative for Sm. I think some AB's spike highest in advance of a disease flare while others lag some. In other words, all AB's don't necessarily mirror one another! My doctors counted anything that had EVER been positive as permanently positive.

What kind of skin biopsy you had. You could ask the derm to confirm, and even ask for a copy of the results for your files. The best skin test for lupus, the Lupus Band Test (LBT), is highly specialized and has 2 parts. First part is the usual look at skin sample under the microscope. The second part is special: application of 5 specific immunofluoresecent stains, to see if linear "bands" (lines) appear. The more lines, the greater the odds that you have SLE. When all 5 stains create these distinctive bands, the odds that you have lupus are greater than 99%, which is interpreted as YES. Why I suggest asking more: my derms at first only ordered a run-of-the-mill biopsy, the kind that lacks part 2, and those results were not helpful. My 8th derm was the one who decided to do a full-blown LBT and basically said my earlier biopsies had been a waste of time and money.

You could ask your doctors about the conditions featuring your HIGHEST antibodies, also ask them to confirm whether you've been fully assessed for those conditions. Are the ones you've tested the most above-range SSA and SSB (anti-Ro and anti-La)? These AB's can be positive in lupus and in Sjogren's syndrome---maybe some more things too, I'm not sure...

Taking Lyrica probably can't hurt, assuming you have no major side effects. If you DO have an autoimmune, the Lyrica shouldn't affect it one way or another, is my best guess. (I hope others comment on this.)

Finally, you mentioned new symptoms. What are those (if you care to share)? Thinking of you & really sorry you're still in limbo. We understand limbo here, unfortunately, given how lupus and its "close cousins" can be so very hard to diagnose. Bye for now, Vee[/QUOTE]

Hi, Veej! Thank you SO much for your response. *-*

Yes, i started taking the Lyrica. Im really hoping it works .-.

About the skin biopsy. I am with a copy of the results. it has 2 pages.
The first one says "Anatomopathological test", and the diagnosis is the dermatitis one.
The second page is the "Direct immunofluorescence test". They tested for: IgA, IgG, IgM and C3. And all of them says "negative reaction". Is that the same you did?

I did the anti-Ro and anti-la this time too. All negative.
In the past the anti-Ro and anti-rnp were the highest ones.

The new symptoms are:
Light sensitive eyes, a white stain in the vision of the righ eye '-', my hands turns blue sometimes, hair loss, night sweats, little red dots on the skin (?!), fever, mouth and nose sores.





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