The Struggle of Getting Diagnosed With Lupus

By Meghan Bea

1 min read

Last updated: March 2023

If you are struggling to get diagnosed, you are not alone. Most people search for answers for 7 years before they are diagnosed with lupus. The pre-diagnosis stage is one of the most challenging stages to go through when you have lupus.

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CommunityMemberLR Member
<inline-mention username="Meghan Bea" user-id="2483318"/> thank you so much for this video. I looked back and my first negative ANA was 9 years ago. Now I’ve finally tested positive with IFA (my PCP was ordering the 5 antibody panel multiplex all those years)……the Rheumatologist I went to was completely dismissive because I’m negative to the antibodies she tested for. There are several linked to my ANA pattern that she didn’t order. She actually put in my chart that I showed NO signs of synovitis or inflammatory arthritis during my exam. She literally never even looked at me. Her APRN took my H&P and she could see that I could barely walk. CRP five times the reference high, joint pain in shoulders, hips, knees and ankles…..nasal ulcer, Raynaud’s 30+ times in 3 months and I’d never experienced that before. I walked out with a diagnosis of Fibromyalgia and a prescription for Cymbalta. Back to square one. Now to wait months to get a referral for a second opinion and the flare is subsiding so the next one probably won’t believe me. All that to say, this video gave me encouragement to keep trying, even when no one else gets it. Thank you. 
1. GabbyFormica Community Admin
 <inline-mention username="CommunityMemberLR" user-id="6892036"/>, I am so sorry you have been treated this way by the very people who are supposed to be helping you! I'm so glad you have continued to advocate for yourself and not settle for their lack of answers! You are not alone! Gabby (team member)
Meghan Bea Moderator
I'm really sorry you're stuck in this stage. It really is the hardest part; things get better when you've been diagnosed and have found a doctor you trust. Don't give up, and remind yourself as much as you need to that your pain is real and you're not imagining it. A doctor who takes you seriously and treats you with respect is out there. Keep searching. <3 -Meghan, <a href='http://Lupus.net' target='_blank'>Lupus.net</a> Team Member

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