Just found out i possibly have Lupus and i have a friend that has an autoimmune disease and she told me to get a binder and get all my bloodwork and tests results printed and to always have them for appointments then they can tell when you have flare ups and stuff.

@A MyLupusTeam Member thanks so much for sharing. Getting diagnosed seems to be the hardest part for a lot of folks. Praying we all receive the help and answers we need. xoxo

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A MyLupus...

Hi Jams! Thanks for your response. I wasn't tested for ENA antibody and will bring that up in my visit with my rheumatologist. Take good care of you and I will post an update when I know more.

And Lisa, from what I understand the dsDNA and other specific antibodies are really tricky to catch as they can flucate a lot going from positive to negative.

Some drs believe they indicate current lupus flares or can predict them so their fluctuations are recognized. That’s why it’s not required to have a positive dsDNA for diagnosis but the rheumys I’ve seen require it or an ENA antibody for diagnosis 🙄

Also, not every person with Lupus will have dsdna. Ive seen research saying anything from only 30% to 50% of those with Lupus will ever be positive for it

Now sure if that info helps but hope it sheds some light

It does seem to be the hardest part and can be quite discouraging. In my experience doctors don’t even bother reading labs correctly or will forget medications you’re on that could alter labs etc. I feel my rheumy is lazy and so he won’t dx til there are such glaring signs he’ll need to or be found guilty of malpractice

So fight for your health and don’t be afraid to get 2nd and 3rd opinions! Most here have