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Hi. I had problems from early childhood, including two acute episodes when I was very young (severe pneumonia, then encephalitis). I had joint & long bone problems (shins & arms) from age 13 on. Then severe GI problems from age 25. I didn't have rashes until my late 30's, and these matured from an early papular form to full-blown annular (circular) lesions over a period of eight years. I was Dx'ed at age 47 with the SCLE "subset" of lupus.

But honestly? I'll never know whether I could have been Dx'ed earlier, meaning, was there enough there to support a Dx, had someone thought to run the right blood tests, at the right time? Or done proper skin biopsies, meaning proper for this condition? I'll just never know, really.

But I am sure that the first five or six dermies I saw BLEW IT. They didn't recognize the SCLE rash type, causing them NOT to order immunofluorescent stain tests. Their lack of up-to-date knowledge cost me at least 4 years.

Also, I was ANA-negatve, which is true of maybe only 30% or so of those with SCLE. So any dr. who did run the ANA may have just stopped right there, without calling for specific autoantibody tests like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc. It was anti-Ro that I turned positive for. I never even asked for bloodwork copies, so trusting was I! (Duh!)

There are so many symptoms & so much variety from person to person! So I only throw these thoughts out to convey some of the pitfalls I encountered. Knowing what I know now, I'd have bolted to a teaching hospital on my second big rash. But that's hindsight... But I hope something here perhaps gives you something to mull over. Just give a yell if you want to discuss anything here, OK? Best wishes to you, Vee





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