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Lupus question of the century

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Old 04-13-2006, 05:30 PM   #1
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Location: Victorville, Ca USA
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Lupus question of the century

Hi everyone I just need some good advise before I dive any further into Lupus research. Is there ANY way a person can be tested for lupus and have it come back negative and still have it???? I asked dr who thought I had RA to check for lupus and they say no way.
They are looking at thyroid levels and TPO is 70.8. But apparently no lupus. Well, many of the symptoms fit AND I have a butterfly rash and have for awhile on my face. Not around upper lips just the butterfly shape. AND last summer the sun made me sick. I haven't really been in the sun much lately but.....
Just need some advice before I begin to research
Thank you everyone for time

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Old 04-13-2006, 07:57 PM   #2
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Re: Lupus question of the century

Actually yes.. I was diagnosed with SLE Lupus 4 years ago, they also thought I had RA in the beginning but has since been ruled out.. I just went to a follow up appt today and found out that my ANA for Lupus was negative.. But that doesn't mean I don't still have it.. Medications can affect these readings and going into remmission as well.. I also heard that blood work isn't the most accurate way to test for Lupus.. my Rhumy does a different study he does an MRI of the neck and reasearches how things are functioning that way, I haven't figured it all out yet but he has kept my symptoms at bay and spends alot of time with me so I trust whichever direction he is taking this.. I still get blood work done regularly as I have to ensure my Plaquenil is at an adequate level and my thyroid level is ok..

Definitely don't hesitate to research and get 2nd and 3rd opinions.. The rash could also be Rosacea related which is what I experience I don't get the normal lupus rash... I do get very sick when I go into the sun have had heat stroke 2 times since being diagnosed.. so I have to be really careful to be covered up more or keep in the shade which is hard for me but a must.. sounds like you have the same symptoms I do but thats just my opinion.. Don't wait too long to get checked out again..

Old 04-13-2006, 08:40 PM   #3
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Re: Lupus question of the century

Hi, Deena. I agree with what Rosta04 just wrote. Test results can wax & wane, I've read---and lupus can take years to reach critical mass in some people. Plus I suspect drs. put way too much faith in the ANA result, in particular. I found this one out the hard way, as I was persistently ANA-negative, and it took years of testing for my anti-Ro to come back positive. Yet the findings from my many skin biopsies all said lupus, all along. I was finally Dx'ed with the SCLE "subset" after YEARS of this nonsense.

The tests are what they are---meaning, there's a real art to matching someone up with the "4 of 11" ACR list. To do this properly, a dr. should consider your LIFETIME history, not just what you've got the day you walk in.

I ended up going to a teaching hospital rheumie, believing the practice had seen all kinds of lupus, and all variants, too. So, how long has this being going on for you?

Best wishes, Vee

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