Did your loved ones want you to get a second opin... - LUPUS UK

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Did your loved ones want you to get a second opinion?

GhostfaceMcGee profile image

I recently told my parents about my primary doctor referring me to a rheumatologist for further evaluation, because I may need to switch back onto their health insurance for now since my current health insurance does not cover specialists (I am almost 24). Before I would go to a rheumatologist, though, they said I should repeat the ANA blood test with a different doctor because they think it was a false positive or was accidentally tampered with... My ANA was a titer of 640 homogenous and 2560 centromere.

I have a good relationship with my parents, but is it ridiculous to request a repeat ANA test from another doctor?

I am not opposed to re-doing the test, but it almost tells me that my parents already do not fully understand things. A diagnosis would not happen with a simple blood test. I have not even touched the subject of the symptoms I have been having, because I look healthy, and they have a difficult time believing there could actually be something wrong. My symptoms have also decreased since I had the blood test about 2 weeks ago, so if I would test negative the second time around, they would have reason to believe that all is well for good.

Thank you for reading this far, what are your thoughts in your experience?

8 Replies

Hi, at your age, I would be proactive in your health care and be honest with your parents and tell them this. Get written results from your Dr that you trust. Trust is a big word, and tell your family that kindly. You know how you feel, put your cards out and tell them your symptoms, get real information on lupus and have a discussion with them. Google lupus basics 101 on line and read it. Have your family read it too. Then together you are showing them why you feel the way you do. I know it is hard, and you are fortunate to have there health care coverage. Help them to understand to help you, there child. Stay strong, keep a journal of your symptoms, and always be open to new possibility. We here in this hub all have many issues, and you can gain a wealth by reading others stories. Share those with your family too. Hang in there, you are not alone. Sending you peace and blessings thestorm

I agree, trust is a big leap to being proactive.. I would not want to wait until my health would potentially take a turn for the worse. Thank you so much for your encouragement. I think that if my second opinion doctor mentions that a rheumatologist visit is a good idea, then I will look for resources for my parents so they don't feel in the dark about all of this

Could their private health care provider requested this test prior to referral??

Yes, thankfully I was able to get a last-minute appointment with another doctor today for a second opinion! It will be covered! (before visiting the rheumatologist)

ANA only needs to be positive once to meet SLE criteria - the UK guideline includes the American College of Rheumatology criteria, Table 4. You're absolutely right that a blood test isn't a diagnosis - it's a rheumatologist's clinical judgment, and most look for 4 from 11 criteria to make a diagnosis of SLE: ANA is one....in short, repeating ANA won't progress things

Lupus UK has great info on getting a diagnosis and a wide range of topics on the website

Record all your symptoms, as autoimmunity is mostly relapsing-remitting...

Keep posting, let us know how you go...this forum is a good place to be xxx

GhostfaceMcGee profile image
GhostfaceMcGee in reply to eekt

Thank you so much. I was thinking the same thing, someone could have an auto-immune disease and the ANA will not always be positive, but also depends on their history of symptoms. So many factors.. I will keep everyone updated on how things go

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Hi GhostfaceMcGee,

How did your appointment go?

An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus. It is important to remember that about 20% of people who have SLE will develop a ‘negative’ ANA during treatment.

dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

You may find it helpful to download or request our free information pack at lupusuk.org.uk/request-info... - this can help your parents understand what lupus is and the symptoms that are associated with it.

Best wishes.

Thank you Chanpreet Walia, your info and resources are helpful! And the second opinion appointment went well, I'm going to post an update on things.

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