Re: Marty/Undifferentiated blah blah

October 4, 2010

Hey Marty. I know you are right and that it is a good thing that they treat

Lupus & Stills with mostly the same meds, etc. And that getting treatment is

definitely more important than having the absolute diagnosis. I would still like

to be able to say I have (blank) to people instead of going into a long

explanation of well they think it might be stills...what's stills? well blah

blah blah or maybe lupus well yes I've been tested for blah blah, yes I've seen

this specialist and this one blah blah. I'm sure you know what I mean. Also I

believe there are a few differences in things like prognosis and specific

problems that might be more often associated with Lupus or Stills even though

they are so similar and everyone is different and all that. Btw, I think us

nurses are often super self-diagnosers! lol We know too much for our own good

some times. My sister and I have speckled ANA pattern only very slightly

positive at 1:80. So our rheum says it's " false-positive. " The ANA test is weird

though because it can go back and forth between positive and negative in the

same person at different times. And it tends to evolve/change over the course

of the disease, tending to be negative early in the disease only to go up later.

I've read, and my rheum says it is positive @ 1:80 and speckled in up to 25% of

" normal healthy " individuals, you can have a positive ANA and not have Lupus and

also can have a negative ANA and have Lupus. Then there's the debated

" sero-negative lupus. " It's a lot of gray area and I feel like it's usefulness

as a diagnostic test is not all it's cracked up to be. It's interesting what

you and Liz said about cases of Still's turning into Lupus? I wonder if it's

really changing into a distinct other disease or if it was Lupus all along?

There's still so many unanswered questions about auto-inflammatory diseases huh?

The lines are very blurry. I admit that I do have a tendency to read up on

every test I get, every lab result, every med. My sister on the other hand likes

your approach better, where she doesn't want to get bogged down in all the

possibilities and maybes and just wants to know what she needs to. It's probably

partially different ways of coping. The nurse in me wants to learn everything

about it I can I guess, with patients you gotta know what could maybe happen,

always anticipating and watching out for signs of things. But I really don't

tend to get myself worked up or panic about stuff though so I don't really think

it's too bad of a thing for me. Anyways, thanks for the input!!!!

Aubrey

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