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I was diagnosed 6 years ago with lupus, then 4 years ago I was undiagnosed (ANA was normal I wasn't having a flare) Now Im exhausted, have miserable pain in my hips, have a heartburn-like sensation that no antacid can help, numb toes, swollen lymph nodes for heavens sake can't anyone make up there minds! Haven't seen the rheumy in 4 years because of the undiagnosis. NOW WHAT???
Kristi
 

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Hello Kristi and welcome :)

I have moved your post here to the introductions section so that it doesn't get lost on somebody else's thread.

I am presuming that when you were "undiagnosed" you also stopped takig any medication (even the baseline plaquenil)?

I am still so shocked at how people can be undiagnosed just because ANA goes negative. In most people it isn't even checked after initial diagnosis because it becomes irrelevant (only having to be positive once) and is not an indicator of disease activity.

I can only encourage you to seek out a GOOD rheumy and to go back and get some treatment. By being on a med like plaquenil which is disease modifying, you can control the disease better, reducing the frequency and severity of any flares you may have. Usually people are only taken off plaquenil if they remain in "remission" for a long period.

If you need a recommendation for a lupus specialist in your area there is a find a doc forum here. Remember that not all rheumies are lupus specialists.

bye for now,
Katharine
 

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:welcome: Kristi,

I second Katharine's opinion. You should definitely be seen by a rheumy. It sounds like you are in a flare.

Getting a rheumy appointment may take some time so you might want to see your GP first. The GP could investigate the heartburn type pain and get you some relief.

Take care,
Lazylegs
 

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Discussion Starter #4
Thanks so much for your response. I am just not sure what all this is about. I haven't had a flare in 6 years, not even when I was pregnant. I recently started a new job, moved and my hubby got laid off so I think stress triggered it. I feel so dumb calling my doc, who I just saw two weeks ago and was feeling fine. The symptoms are so general. Last time I saw five different specialist before the rheumy said "I think you have mild SLE" I was 19. I'm not sure if I want to do this all over again. Am I crazy?
 

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You were very fortunate to not flare for 6 years. That does not mean you didn't have Lupus. I totally understand you not wanting to go through everything again, however something is going on.

The heartburn issue definitely needs looking into. You do not want it turning into a more dangerous situation. I don't know if you tried any other remedies than antacids. The following site has some worthwhile suggestions.

http://www.webmd.com/heartburn-gerd/guide/lifestyle-changes-heartburn

Take care,
Lazylegs
 

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Hi Kristi,

Welcome to the forum, it is nice to meet you.

Yes, stress is a factor when it comes to our lupus. Moving and having your husband get laid off is highly stressful. With a new job too.

I do encourage you to go get checked out with someone that knows about lupus. Maybe your GP can send you in the right direction to a rhumey.

Dealing with lupus is always a surprise. You can feel good one minute and whamo the next one you aren't.

Take care of yourself.

Lyn
 

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Kristi,
Did you ask the doctor why he thinks you do not have lupus any more? I have never, that I know of, had positive blood work for lupus mine was done with a biopsy. I would be asking the doctor about the other things that are going on with you to see if he has any answers. Is this a doctor that you trust or want to keep seeing? If it is you will have to work on him about the lupus, otherwise I think after I tried the above things would start looking for a different doctor maybe.
Oh by the way Hi and Welcome to the site. I hope you feel better soon. I did have one more question is this the same doctor that told you that you had lupus?
 
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