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Old 05-03-2006, 12:25 PM   #1
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how many self-diagnosed first?

How many people here "self-diagnosed" their lupus before their dr finally dx'd it?

 
Old 05-03-2006, 12:43 PM   #2
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Re: how many self-diagnosed first?

Hi. I sorta/kinda figured it out myself, by spending 4 days on the Internet looking for rashes that physically resembled the one I'd had for 8+ years. What I found was enough to get me to switch drs., to a new rheumie.

My local drs. (incl. dermies & rheumies) kept saying I didn't have lupus. I did, but it was the SCLE "subset". I was positive for anti-Ro but negative for ANA. In this subset, a meaningful percent can be ANA-negative...

And how about you, meaning how are you faring? Are you worried about the Dx you got? Or about not getting a Dx? Best wishes, Vee

 
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Old 05-03-2006, 03:21 PM   #3
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Re: how many self-diagnosed first?

I was dx'd with fibromyalgia years ago and have had major depression since I was a teenager. So now it seems like when I take my complaints to my dr she just chalks it all up to both of those. My symptoms don't really fit the fibro mold anymore. The last time I talked to my dr about it all she did was run a sed rate, which was normal. I've been completely miserable lately though - pain, extreme fatigue, etc. So I'm seeing a new internal medicine doc next Friday and going to push for some bloodwork and a referral to a rheummy. What's the best way to find a good rheumatologist? I'm starting nursing classes next week and with this fatigue level I don't know how I'm going to do it. I could literally sleep all day I think!

 
Old 05-03-2006, 09:24 PM   #4
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Re: how many self-diagnosed first?

Kayte, I should have stated clearly earlier that my new rheumie performed all the expected tests all over again & then some. AND he sent me to a dermatopathologist (a dermie who is also a board-certified pathologist) to do another skin biopsy and to review all the OLD skin biopsies as well.

i.e., my paltry "knowledge" & pretty good instincts didn't take me very far on my own---just to the doorstep of a really good rheumie, one affiliated with a teaching hospital. And he's helped me tremendously.

How to find a good rheumie? Good question! If you hit it off with your new GP, maybe you'll trust the referral you get enough to try it & see. I hope so. Otherwise, maybe nearby teaching hospitals or direct word-of-mouth from other rheumatology patients?

I hope you make progress & soon. I commuted by train & subway for many years in a daze, so I understand how fatigue can devastate. Best wishes & HANG TOUGH. Take good care, Vee

 
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