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Old 07-29-2002, 08:02 PM   #1
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desertwinds HB User
Post immunologist or rheumatologist???

My daughter has a high positive ANA, positive anti-dsDNA, positive SS-B (Sjorgren's), and a positive anti-smith. Lupus is suspected. Which doctor would be better for her?

 
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Old 07-30-2002, 08:05 AM   #2
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Hi again.
Having Sjogren's, SLE, RA, Raynaud's, I know where you are coming from! I was diagnosed about three years ago. I've gone through a number of Rheumy's and an immunologist. My first response is to go to a Rheumy, but because the diseases are so complicated and require a good working relationship, I think it's better to find the doctor that works best with your daughter.

If you know anyone that has autoimmune problems, ask them who they see - and if they like them. Ask doctors who they would recommend. Call your local arthritis foundation (arthritis.org) or lupus foundation (lupus.org) and ask for referrals in your area. Once you've gotten some names - talk to the referral doctors - find out if they focus more on arthritis or lupus. (I've encountered a number of rheumys that focus more on osteo-arthritis, so they weren't as committed to my situation).

When you find someone you like - normally it takes a couple of months to see them. Try this trick - get your daughter's regular doctor to call the Rheumy's office for you and make an appt. (Usually gets you in MUCH faster)

Get copies of ALL tests done for your records. Don't blindly take whatever the doctor perscribes - ask why, what are the alternatives, side effects... I've had some doctors try to push some serious meds to me that I wasn't willing to take.

It helps to keep a journal/log of symptoms - including how she's feeling, sleeping, eating, fevers, etc. If she gets any rashes, take pictures.

I could go on and on - but that's the beginning.
Good luck.

 
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