Fighting for Answers

By AmberB.

1 min read

It's been 26 years since I was first told I might have lupus, and I still don't have a definite diagnosis. Because I have periods where I am fine, people seem to overlook the increasingly common times when I am barely functional due to pain, fever, and other "fun" symptoms. It can be so frustrating to know there is something going wrong in my body, but not be able to give it a name. My doctor and I have decided this is the year we will push for the right specialists, tests, and answers, in order to get the right treatment.

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Racquel H. Dozier Moderator & Contributor
<inline-mention username="AmberB." user-id="4705175"/> wow that is such a long time to have to wait for a diagnosis. It can be so tricky and having issues with being believed is so discouraging. I’m happy you have a doctor who is willing to help and work with you to advocate for proper testing and help. Keep fighting to be heard, after all you know your body best. Thanks so much for sharing your story. ~Racquel ~ lupus team member
Cazmarglom Member
I am waiting for a diagnosis but no Dr seems to want to give me one .it's so frustrating when you know your not well but they don't want do anything about it .been pushed from one GP to another neither want to diagnose... I've been like this for years ...i.just want a diagnosis so I can get my head around it and try to deal with it X ❤️
1. GabbyFormica Community Admin
 <inline-mention username="Cazmarglom" user-id="6620835"/>, That's beyond frustrating and sadly so common for so many in the lupus community. Have you been able to schedule any appointments with a Rheumatologist? They may be able to order the right blood tests: <a href='https://lupus.net/blood-tests' target='_blank'>https://lupus.net/blood-tests</a>. I hope you can find some answers and start a treatment plan soon! Gabby (team member)
Cazmarglom Member
Thank you for listening.x
Josiel320 Member
Anyone get Saphnelo infusions???
1. Doreen H Community Admin
 Hi <inline-mention username="Josiel320" user-id="6646113"/>, I posted this link on another thread but just wanted to make sure you got it. (<a href='https://lupus.net/treatment/anifrolumab' target='_blank'>https://lupus.net/treatment/anifrolumab</a>). This should include some helpful information pertaining to Saphnel infusions. Kindly, Doreen (Team Member)
Josiel320 Member
<inline-mention username="Doreen" user-id="4211472"/> Thank you Doreen. I have read those regarding Saphnelo but I was hoping I could hear from people that are getting it. Since I have asked this question on other platforms, it's so weird to me that not 1 person has said I am getting that & here's my experience.