UPDATE.... - Lupus Message Board

BJMILLERJB · 03-08-2001, 11:58 AM

Well I left with what I wanted, a referral to the rhematology clinic at Walter Reed (military hopsital). My doctor told me she wasn't at all concerned about the positive ANA, she says she sees them all the time. If it hadn't been for my research and conversations with you two I probably would have taken her word for it and accepted this as the normal toll taken on a body at age 29. I was actually a little suprised that she wasn't aware the positive ANA (as long as not drug induced or without symptoms) is usually indicative of a connective tissue disorder. I actually printed off some of my findings from other doctors that said that very thing. SHe basically admitted this wasn't her specialty and referred me to the clinic.

Ok the result that was negative was something she called the double stranded DNA test. I noticed that all of the tests you ladies have had that start with DNA were negative as well. I find it very interesting that in her mind this ruled out lupus. Maybe it does I don't know if this is the same type of DNA tests that you have taken or not. Does that sound familiar to either of you? She said she did not get a titer reading with the ANA test.

Anyway let me know if that test means anything to you and thanks again for all your help!

Jeannie M

Ann S · 03-08-2001, 03:33 PM

Jeannie,

It doesn't mean anything to me.....but, I noticed I have results for 2 DNA type tests. Maybe Maybe the double means they ran both and just put the results together. One of the reasons sited for dxs. being so hard with AI disorders like Lupus was that you could have them even when tests were neg. That's why it's necessary to see the specialist to make the determination. When's your appt.? Way to stand up for yourself!! Hope your specialist proves Jeri & I wrong, but the thought was in your head before you talked to us, and now hopefully you can be sure one way or another. Good luck, Ann

BJMILLERJB · 03-09-2001, 12:09 PM

You know the thought was never in my head until she said the ANA screen was positive. Then I started reading all the info and it just sounded so familiar. I understand the so many AI diseases have common symptoms so who knows, but I do know SOMETHING is not right! I noticed on one of your DNA tests it had (DS) next to it. Perhaps this stands for double stranded. Just a thought. Obvioulsy we aren't the doctors so who knows? I tried to get an appointment scheduled yesterday but they didn't have my referral order in yet so I have to try again today! I'll let you know when I find out more!

Jeannie M

Ann S · 03-09-2001, 04:47 PM

Jeannie,

I was on the arthritis site here yesterday & there's a post labeled "references" or something. I opened that and I went to the Mayo one that was listed, then to the link "living with Lupus". In there it explained about the neg. test results etc. that I was trying to get across to you.

We're hoping & praying for you, Ann

Jeri · 03-10-2001, 06:40 AM

HOORAY JEANNIE! YOU ARE A WINNER!
Good for you that you were calm and not intimidated by the doctor. I know, it is so hard to remember that the physician is hired-help. Even they want to see themselves as the know-all-do-all person. They don't have all the answers and should be able to admit that readily- especially in this field where there are few clear-cut answers. I am so excited for you- you have the encouragement, now, that someone with specific training will address your symptoms and concerns. I am a "old Marine wife" so I empathize with your experiences. I remember having to wait til payday to afford to go to a civilian doctor when I had a classic case of pneumonia when my children were little. The base doc (who didn't speak english from what I could tell, said nothing to me but listened to my chest. When I asked if he would do a chest xray (he shook his head no) and then asked why it hurt so badly when I coughed, he simply wrote a script for terpin hydrate ("navy gin"). I went home, scoured the cabinets for any antibiotic I could find and took those until payday. The civilian doc said that it was a good thing I'd taken something, cause I had a very bad case of pneumonia when I finally got to see him! That taught me a lesson: It's hard to be your own advocate when you're scared or sick.
Ann, thank you for keeping the "ball rollin" the last couple of days, I have been way too busy this week and kinda crashed whenever I got a chance. :-) You know the feeling- yearning for a favorite pillow and a quiet room all week!
Reading your excahnges, Ann and Jeannie has kept me boosted up. Sorry I was lurking and not participating- your were still in my prayers.
Jeri