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I went to my Rhemy appointment (he is part of a Lupus treatment centre) and he bascially said my other doc was wrong. While the blood tests are positive, he is sure everything else is working the way it should and he is not ready to stamp "LUPUS" on my chart. While this is a happy moment, I am also left with the migraines and the tiredness and occasional sadness (which I know is definately not from circumstance/personality).

having read how so many people have battled to get their doctor's/diagnoses right - now I am wondering which of the two doctors was right
 

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Hi Cherry,

Frustrating I know. I am curious, have you ever been tested for APS? (Hughes Syndrome) How long have you carried the dx of Lupus to now be told you do not have Lupus? And, if the bloods are positive and your symptomatic then why the reversal of diagnosis? How many of the 11 Lupus criteria do you meet?

With all these questions I will share with you that in 2005 I was dx with MS. In my heart I always knew I did not have MS. It was not until recently that other things clearly showed up in my bloods that lead to a new diagnosis, the right medicine and now hopefully getting on with feeling better.

If in fact you do not have Lupus then certainly, like with my case, I hope you get a correct diagnosis and you too can get on with feeling better. There is nothing worse then being incorrectly diagnosed, taking drugs for a disease you do not have, continuing to progress because the drugs your taking are all wrong, etc.....

Hopefully they will figure it out for you. Keep us posted.:wink2:
 

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I guess my main question for you would be - are you getting any sort of treatment for whatever condition this other rheumy thinks you have? Is this doctor just wanting to call it UCTD instead of lupus but keep on treating? What bloods were positive at what levels?

The most important thing is to get adequate treatment for your symptoms/condition. And of course, to be correctly diagnosed! So to have two different opinions is very frustrating indeed. The headaches/migraines can be a symptom of APS as Karol mentioned, so get that investigated for via some blood tests if it hasn't been done already.

I can understand not wanting to put LUPUS in your chart until absolutely certain due to the effect it can have on various sorts of insurance... if your symptoms are headache and fatigue, and no joint pain in particular, then I can understand the second rheumy wanting to back off a lupus diagnosis at this time.

It is important to continue to receive follow up care, or a third opinion, especially as long as symptoms last. Maybe with a third opinion, you'll have two of the same mind and can have a little more confidence in the diagnosis and treatment provided.
 

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Hello cherry red :)

I'd say it all depends who diagnosed you first and what was the basis for the diagnosis. What blood tests were positive and what symptoms do you have?
You mention your GP and " testing positive for lupus" If this was the ANA test being positive doesn't mean you have lupus.
A few doctors don't diagnosis lupus unless there are specific antibodies or biopsy results but in that case you might get a diagnosis of UCTD as already mentioned. To get more helpful comments from us you need to give us some specifics :)

Cheers
Clare
 
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