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debbie-b
04-12-2014, 06:11 AM
After moving back to Dallas in december, it was time for me to see a doctor. He was my primary 8 years ago before we moved to NY.
I told him that I now have Lupus, RA, Sjogrens and Autoimmune Hepatitis. He looked at me like he was doubting what I was saying. I asked him if he wants to get my records from my primary and my rheumy in NY. He said no.
I have to say, that I have been feeling pretty well for weeks now. Well my doc took blood and urin. He called me yesterday with the results ( I have to insert this, please note that I am not trying to offend anybody, but this is a very important fact) my doc is chinese and his english is very hard to understand.
The first thing he said was, YOU DON'T HAVE LUPUS OR RA', you do have a little bit of sjogrens and your liver enzymes are high. Of course I asked what he is talking about, but it is very hard to understand him. He told me that I don't need any meds. I had asked him when I saw him if he knew a rheumatologist and he said that I don't need one, he can do it all.
I guess its time to find another primary and a good rheumy.
My husband was present when I was on the phone with this genius and is all excided that I might not have Lupus. I tried to explain that alot of times your bloodwork can look pretty good, but that doesn't mean you do not have lupus. It just means that you might be in remission. ughhh
Has that happen to any of you? Did a doctor ever say, after you were diagnosed, that you don't have it?

Debbie

Nonna
04-12-2014, 09:53 AM
Yes, my rheumy in Atlanta did that, changed her mind I did not have Lupus. I then pointed out my medical history and she started to waver. But after treating me for 2 years, she decided that I was a very unusual case. Not at all in the norm, as she understood it. You definitely need to find a new primary and find a rheumy who knows Lupus.

Saysusie
04-12-2014, 11:24 AM
Unfortunately, this happens more times than we can recount. You are absolutely right; often with your meds, some of your symptoms may go away and your lab tests will attest to that. For informed doctors, this means that your medical regimen is working. To uninformed doctors, this means that you do not have the disease.
Stopping your meds would be a big mistake! So again I agree with you; find another rheumatologist and primary care physician. Find doctors who are familiar with auto-immune diseases (and in particular - Lupus) and ones who are interested in keeping you in relatively good health (not sending you back to a possible flare-up and re-occurrence of symptoms).
At this point, you know more about your disease and its treatments than your doctor!
I wish you the best of luck. Please keep us advised.

Peace and Blessings
Namaste
Saysusie

debbie-b
04-12-2014, 01:52 PM
Thank you to the both of you.
I have been diagnosed 8 years ago and my doctors ( rheumy and primary) in NY knew how to treat me.
When I had this doctor when I lived here before, he was a good doctor, he probable still is, but he has no clue when it comes to Lupus.
I find it pretty arogant of him, that he doesn't want to see my medical history.
So here I go, looking for two new doctors.

Debbie