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Old 12-03-2005, 10:57 AM   #1
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KittenPaws HB User
Questions needing answered

Who diagnoses Lupus, The GP or the Rheumatologist??

Is lupus onlly diagnosed based on Symptoms, Blood Tests, Or Both???

If I had two possitive "auto immune blood tests" (what i was told) And they dont show up now, and i was told i had lupus, but now im being told i dont have lupus. Then what the heck do i have. this is so aggrivating. I'm sorry im angry. My blood is showing nothing now except "High normals" wich my doctor isnt worried as long as it saiys normal its normal!!!!!!!!


Love,

Kitten

 
Old 12-03-2005, 07:20 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Questions needing answered

Dear Kitten, Either a GP or a rheumie can diagnose; but if both are involved, the rheumie tends to trump the GP. Getting SOMEONE to move on it can be a real nightmare, I agree; ditto with getting multiple drs. to agree...

Anyway, which of your tests was positive? Just the ANA? (It's only a "threshold test" & can be positive in various diseases, with a passing virus, or due to a family tendency...) One of the autoantibodies?

Did you change doctors, with some new character now saying NO LUPUS? And did he/she discuss WHY NOT? Who said it first, GP or rheumie?

Did the dr. who Dx'ed discuss with you the basis on which the Dx was made? FYI, there's a sticky post at the front of the Board with these diagnostic criteria. Further FYI: they apply OVER YOUR LIFETIME, meaning don't have to exist simultaneously. Last FYI: these apply to SYSTEMIC lupus, not to the other "subsets" (discoid, subacute cutaneous, drug-induced & neonatal).

Also notable about the criteria: only two autoantibodies are on the list, anti-DNA & anti-Sm; but maybe 16 or so antibodies & complement readings are seen in lupus. Why? Only these two are considered unique to lupus, so that when they are seen, they add very heavily (if not totally) to a Dx of lupus.

There are a lot of people with a LOT of personal experience here, so I hope you fire back with more info & get more feedback, OK? With best wishes to you, from Vee

 
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Old 12-05-2005, 04:01 PM   #3
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Join Date: Dec 2005
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aussieanita HB User
Re: Questions needing answered

Quote:
Originally Posted by KittenPaws
Who diagnoses Lupus, The GP or the Rheumatologist??

Is lupus onlly diagnosed based on Symptoms, Blood Tests, Or Both???

If I had two possitive "auto immune blood tests" (what i was told) And they dont show up now, and i was told i had lupus, but now im being told i dont have lupus. Then what the heck do i have. this is so aggrivating. I'm sorry im angry. My blood is showing nothing now except "High normals" wich my doctor isnt worried as long as it saiys normal its normal!!!!!!!!


Love,

Kitten

 
Old 01-02-2006, 10:11 AM   #4
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Join Date: Jun 2005
Location: Indiana
Posts: 42
cherylynn1964 HB User
Re: Questions needing answered

I had a dermotologist diagnose me based on two skin punch biopsies and my symptoms. The biopsies did not say conclusively that it was Lupus. They just said Lupus could not be ruled out.
My GP said I did not have Lupus even after the biopsy results and dermotologist's diagnosis. So, I was in Limbo, once again. After my GP left, her replacement said he believed I did have Lupus. I was sent to a rheumy who agreed with my new doc's diagnosis. He ordered a Lupus Test on my blood...I had also had this series of blood tests done by the dermatologist. Both times, they came back negative. And yet, based on the biopsies, which said Lupus could be considered and my symptoms, I was diagnosed as having this disease and began a series of prednisone packs and plaquenil. I now take just plaquenil, and there is an improvement from the earlier days, but I still have many, many bad days. So, depending on the doc, several can actually give you a diagnosis... Mine still causes me moments of doubt and denial because I have yet to have any 100% positive test that indicates Lupus. So, in the back of my mind, I wonder quite often if the docs called it right. On the up side, it's nice to know that someone does recognize I have a serious medical problem. For awhile there, I felt like I was nuts, and I believed everyone else in my life thought so too...
Go to a doc you have faith in, be persistent, and if need be, go on a day when something is messed up on your body. That's what I ended up doing in the early days. Then they can see visual proof...I hope someone can give you satisfacory answers... Good luck
C

 
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