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I could have written these posts myself!!!

Sick all thru childhood, a host of symptoms that *should* have been put together by Docs all these years but have not.

I'm still being tested b/c I have all the critera for diagnosis EXCEPT positive ANA + other labs.

It is SO exhausting and frustrating. I hope at my next appt (in 5 weeks) that the recent, more detailed, labs reveal "something" so I can at least know what is "wrong" finally!!!

I keep getting the **fibro** thing tossed at me too and I know my body and that is not it. I told my Rheumy last week that I like her and all but I don't "want" to have anything wrong with me to keep coming to visit...I just want to know what the heck is going on!
[QUOTE=VeeJ;4704236]IS83, hello. Welcome! In answer to your question, I had problems from early childhood. My drs. (GP's, dermatologists, urologists, gastroenterologists) never suggested a single cause, until my mid-40's. They diagnosed me with Fibro---hung me out to dry, basically. I finally took myself to a metro rheumatologist, and I got answers in less than a month.

So I don't get it either. But one part of me can fathom some reasons why it took so long. I evolved slowly & stayed basically subacute (despite several major illnesses, no major organ involvement). I never had the most "classic" signs that even a middling dr. should recognize, like malar rash, kidney impairment, "classic" autoantibodies like anti-ds-DNA. (I turned out to have Ro-lupus, which is a tiny subcategory, pretty uncommon.)

Sill, another part of me was shocked. The photosensitive rash I'd seen at least 7 dermies for turned out to be lupus-specific; how could they all have failed to recognize it? How could the gastroenterologists (many), urologists (several), neurologist, endocrinologist, and GYN's (many) not have seen some pattern? Plus I'd had joint pain and pain along my long bones (arms & legs) since age 13, which should have pointed to rheumatology. I often was anemic, my sed rate was elevated at times, my WBC count was depressed at times. Etc. (Aargh.)

BUT I'll never know at what point I became "diagnosable"... maybe I wasn't even making autoantibodies until late in the game? (Dunno.)

Is the dr. you're seeing next week a rheumatologist? Hope so! Post more when you can, OK? Hang tough. With warm wishes, sincerely, Vee[/QUOTE]

So what is anti-ro and how is that diagnosed? My labs keep coming back border/neg and the rhumey throws her hands up. I do have PA and she keeps going to that or tacking on Fibro (I don't agree with the fibro).

All of the Lupus symptoms over the past 18 years keep coming back again and again. The photosensitivity never left - what are your photo issues? Mine come up a day or two after being in the sun and I become extrememy exhaused/sore joints and I will have to get into bed and will sleep for hours! I get a rash all over the tops of my feet/arms/torso and if scratched will bleed and itches like crazy.

I'm super frustrated!!





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