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Galpster, yes, a very difficult Dx! I had things piling on over many years, without a CLUE as to why. Two life-threatening episodes as a child when overdosed with sulfa antibiotics, with 106+ fever, convulsions, pneumonia and encephalitis. Age 8, widespread bullous (watery blistery) rash. Age 13, a solid year of pain, elevated ESR, leukopenia, and low-grade fever. That's also when fatigue episodes began. Next add-on: heavy periods, sometimes lasting 12+ weeks. Next add-on, in early 20's, chronic irritable bowel, with episodes that sometimes landed me in hospital on an IV. Next add-ons, early 30's, migraines and urinary misery. Next, mid-30's, a terrible episode that may have been mesenteric vasculitis, but I'll never know for sure. Final add-on, early 40's: annnular (targetlike) nonscarring rashes on arms & back that were mild for 4 years, then ramped up over next 4 years.

After seeing local drs---multiple gastroenterologists, urologists, GYN's, neurologists, dermatologists, and one rheumatologist---one local specialist suspected lupus but no one to whom he referred me agreed, as my ANA remained negative. I finally took myself to a teaching hospital rheumatologist. He re-did bloodwork & urinalysis, and also sent me to a dermatopathologist who did one last deep-punch skin biopsy, THIS time finally adding immunofluorescent stain tests. Dx was Ro-lupus. Plaquenil kicked in nicely, but I still have bouts of fatigue and pain.

My suburban drs. would have NEVER figured it out. I doubt they'd ever seen this subset of lupus. They'd certainly never seen my targetlike lesions. For those alone, I saw 6 dermatologists and had 3 deep-punch biopsies, to no avail. I got LOTS of sage advice. FIND YOURSELF A GOOD THERAPIST. GET RID OF YOUR DOG. LEARN TO LIVE WITH "IRRITABLE BOWEL", MANY PEOPLE HAVE TO. STOP STARVING YOURSELF, GAIN SOME WEIGHT.

And, the most disgusting & moronic of all, I THINK YOU JUST LIKE COMING TO MY OFFICE BECAUSE YOU LIKE ME. That's the one who sent the nurse out of the room then GROPED me. To this day I'm proud of my response. I told him if I ever developed an insatiable lust for the PILLSBURY DOUGH BOY, I'd give him a call. :D Needless to say, that was my last appt. with him.

I can laugh now, but it wasn't funny during those long years. How about you? How were you treated? How long did it take for someone to suspect lupus? Who first suspected it, and who diagnosed you? Most important, how are you doing since? I hope well! Sending warm wishes, Vee
Mel, hi. What do your rash lesions look & feel like? For about 4 years, mine were red raised bumps resembling plump mosquito bites, but they didn't itch. Then same bumps would reappear, expand into perfect circles with clear centers, then the borders gradually expanded outward losing circularity. Then they'd fade, without scarring or depigmenting.

Mine were on sun-exposed areas of upper arms & back. I had about 4 batches per year, gradually worsening. By the end, I had about 3 rash batches overlapping. As the rashes were "on the rise" is when I felt the worst overall (bladder, GI misery, fatigue, joint pain, tingling, migraines, etc.)

Rash was diagnosed by a dermatopathologist as [B]subacute cutaneous lupus erythematosus, annular form (abbreviated SCLE)[/B]. [BTW, there's another form of SCLE called papulosquamous (or psoriasiform), that looks very different, a lot like psoriasis.] This dr. stated the obvious: that no one, not even a dr., can tell for sure what certain rashes are without a skin biopsy; and for this rash, ALSO special immune stain tests that revealed deposits of immune "junk" between the dermal & epidermal layers of skin.

My drs. said SCLE rashes are associated with the anti-Ro antibody, which is seen in Sjogren's, lupus, and certain complement deficiencies.

Where people with this rash fall on the lupus spectrum: My drs. said many remain "subacute", but some can indeed experience major organ involvement, including the worst problems seen in lupus = kidney, CNS, etc.

Why ANA can remain negative: it's suspected that in some anti-Ro people, anti-Ro "masks" the ANA findings.

Finally, they said people with anti-Ro may be the most photosensitive of all lupus, thus almost always must avoid UV exposure, including tanning beds. Meaning there's no known correlation with implants... it's SUN that's the known trigger.

If this descripion of SCLE annular form rash seems to be in the ballpark, perhaps you can discuss with your RESISTANT dr., who hopefully will then refer you to a dermatologist or dermatopathologist! And aren't health plans such as yours legally required to have a complaint procedure, where patients can ask a higher-up to review your case and assign you to different doctors?

Of course I'm only a patient, but I hope something above helps. I had a MISERABLE time getting answers and wouldn't wish that on anyone. Post more when you can, OK? Sending you my best wishes & encouragement, Vee





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