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krismarie

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 #1 
So my almost 80 year old mother, who has never had any health issues, develops a small rash on one cheek that the doctor can't diagnose so doctor tests for lupus after she tells them her youngest child has it.  What do you know? My mother has mild positive ANA 1:80, which is not uncommon for an elderly woman, and is now diagnosed with lupus!!!  I am so upset!  She did not suddenly develop lupus at nearly 80 yrs old and my mother wont listen to me that this is not the problem, she thinks she is going to die from this!  It angers me on a different level that my mother never worked a day in her life and got a false diagnosis so easily and so many of us, who actually have the disease, can't get a diagnosis and treatment to try have children, to work, to live somewhat pain free, to extend our lives... 
Cakelady

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 #2 
Kris look at it from this point of view. Doctors love to be able to charge you for everything. The more dx'S you have the more they can charge the insurance company etc. trust me I get your frustration. There was one time that on my check out slip from my neurologist there was at least 10 dx'S I was like what the h e l l and his long time nurse explained it to me. They bill for everything under the sun and sees what sticks. Over the years my dx'S number at the neurologist has gone down while I have gotten sicker go figure

Take a deep breath and let it go.

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upstater

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 #3 
Yes...1:80 doesn't seem particularly high to my untrained eye....particularly at her age. But I obviously don't have the whole picture....or the medical training ;-)

But if this is not a rheumatologist, I don't think they have the capacity to deem a lupus dx.
krismarie

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 #4 
Agree that it is quite normal for elderly people to have low ANA which is why I am upset that she was diagnosed with lupus; she was only tested because she has a rash on one cheek!  She has been healthy all her life, I seriously doubt that lupus would develop so late in life and they ran the full battery of tests and all were negative yet she got the diagnosis based on an ANA of 1:80.  The doctors I see don't consider the ANA to be clinically significant unless it 1:160 or higher here.  

No, she has not seen a rheumatologist...just a GP and not sure if it's a good one. It took me 20 years to get a diagnosis after multiple health issues that took a toll on my health and personal life, caused me to lose 4 babies, now ending my career.  She gets a tiny rash, not typical butterfly rash, and a normal ANA lab result for a woman her age and gets a lupus diagnosis and she was healthy all her life, never lost any pregnancies, never had issues with her kidneys, etc. There is nothing more to the story, I guess it depends on the doctor you go to.

taffylinden

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 #5 
She needs to see a rheumatologist. If she didn't get a referral from her GP, could you persuade her to see a rheumatologist? I wouldn't say anything about proving she doesn't have lupus. Then she'd never go. But what if you said lupus is a very serious disease, so she needs to see a "specialist."

Unfortunately, there are docs who diagnose lupus based on very little information. Of course, he may be thinking she's had lupus for years and just never had an ANA test.

Were you by any chance with her when she got the diagnosis? If not, is it possible she misunderstood what the doc said? 

I hope you get answers that make sense to you. I'm so sorry you've had to go through such a long, rough time. 
Dolphin

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 #6 
I would try not to worry, a dx from a pcp doesn't mean anything. I also wonder if it is possible ur mom misunderstood.  If a pcp really thought it was SLE, I think it would be irresponisble to not immediately refer her to a rheum. If ur mom put u down to be able to discuss her medical information, you should be able to get copies of the medical record.  Taffy has a great idea of how to get her to a rheumatologist.  

I don't see any rheumatologists agreeing with that dx, all the ones I have meet won't take notice unless ur on death's doorstep.   It takes many a  long time to be dx'd with SLE and to be dx'd off the bat I would think you need a "slam dunk case" such as + 640, + DS DNA, nephritis.  Also, at her age, I'm not sure how valid the ACR dx criteria would be as arthritis and kidney problems would not be uncommon.
krismarie

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 #7 
My mother won't listen to us (her kids), she has never been easy to get along with but told my sister about a month ago that if she has lupus, she will need one of us to take care of her.  None of us live near her, all of us are in different parts of the country, and my mother has since stopped speaking to my sister too so now all communication to all of us is only written.  This doctor had told my mother they thought she had lupus before they ran any tests, I guess because they couldn't figure out what was causing that rash on her cheek and treating it with different antibiotics and steroids didn't get it to clear up completely or for good.  That's when my mother told my sister if she had lupus, she would need to move to where she lives (and wanted to be sure my sister planned to stay in that area!) because she would need someone to take care of her...like she suddenly just got lupus and she would suddenly have life altering health changes at that age?  

Anyway, my mother sent me an email yesterday with the copy of her labs to show me how she got her diagnosis.  They ran a thorough Antibody panel along with the ANA but I found it odd they didn't check ESR or CRP, maybe they aren't used to help diagnose these days?  All the antibody tests were negative but that doesn't mean anything, they can be negative for someone who has lupus (or any other autoimmune disease) even in a flare.  I asked her what they recommended and did tell her she needs to see a rheumatologist because they are specialists in that field and offered to research online reviews for ones in her area if she would like.  I also recommended she see a dermatologist, which is what she should have done months ago, my sister has been telling her to do this for months so I am sure she won't do it.  Curious to see how this doctor is going to treat the "lupus".  I can't imagine a doctor would even suggest lupus to a patient with these test results but it's possible my mother has it stuck in her head that she has it since the possibility was mentioned to her prior to the tests.  Sorry, just frustrated...I don't need this drama and my sister doesn't either.  Thanks for the responses and being understanding, I really needed that today :)
taffylinden

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 #8 
I'm going to go out on a limb here and say from all you've told us, I seriously doubt your mother got a definitive diagnosis of lupus. Maybe she really did, but the pieces just don't fit. The doc told her she has lupus and doesn't outline a possible treatment plan for her? Or refer her to a rheumatologist or dermatologist? Or reassure her about the prognosis? And if she's got a history of being difficult and--Forgive me for being frank, but manipulative--then I'd read her decision that she'll need full-time care as the real impetus for this "diagnosis." I hope I'm not being too blunt. You sound like you're at the end of your rope. 

If she asks to come live with you, what'll you do? Since you're ACTUALLY sick, you couldn't really care for her even if you were so inclined, could you?
krismarie

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 #9 
Thanks again for the honest feedback and personal stories, it helps me feel less guilty about my anger and frustration with the whole situation.  I got a response from her, it doesn't sound like she is going to see a rheumatologist or a dermatologist because she said "Specialist here are scarce and if you can get in it's a good three months wait" so I took this as a no.  She lives less than an hour from DC, I think she has access to some of the best doctors and the money to hire a driver if she doesn't want to ask a friend to drive her there or drive herself...she is just being stubborn and wants to stay in her little town.  This doctor has her on steroids, I am not sure of the dose or if they plan to keep her on them...she doesn't give me much info and doesn't answer all my questions.  She also told me she has new rash on her arms and throat now so I told her this is even more reason to see a dermatologist.  Who knows what other meds she is taking, maybe they are causing this rash.  

I am the youngest child and legally the executor to her estate and the one to take over if she becomes incompetent to do so herself.  All of this is stressing me out and stress is a major trigger for me.  Last year my body fell apart, I developed several new significant medical complications. This week I had to go on medical leave, I really should have done it months ago, and now I have to deal with my mother's stuff so I don't know if I can heal myself with all of this.  I guess I have to find a way to somehow ignore her because I know that she is seeing doctors and it is their responsibility to treat her (not mine), I have given her advice that she refuses to take and I am not responsible for her yet (she is of sound mind).  If I was responsible for her and had control over the situation, that would be less stress for me because I would know what to do for her.  
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