Is my Diagnosis incorrect?

maryamasifmaryamasif Member New Member
edited March 12 in Support
I was diagnosed with lupus last year with the symptoms of Rash on knuckles and later developed on entire body, severe headache, swollen lymph nodes , fatigue and a long lasting fever. When I went to the hospital they did all tests possible to see what I have but then later drew the conclusion and said I have lupus. I agree I was quite sick when diagnosed and was put on steroids and I’m still taking plaquanil but I’ve not really had any symptoms following my flare up, I’ve read so many places how everyday is a battle for lupus patients and I’ve tried going into the sun with no sunscreen and I didn’t get any rash. I’m just really confused I’ve talked to my doctors too but they say they are confirmed that I have lupus. Has anyone been or is in a similar situation? 


  • RKO_DSM5RKO_DSM5 Member New Member
    Hello maryamasif-
    I am genuinely sorry you are experiencing the confusion, uncertainty and overall anxiety regarding what is happening with your health. Let me first say, you are by no means the first to be asking these questions. I have and sometimes still do. It is common for physicians to diagnose Lupus (other diseases like it) by default when no definitive medical condition can be pinpointed at that time. It results in frequent mis- diagnoses or ineffective treatments when its treated based on what sounds like was an isolated incident for you. (Before I write anything else- who is the prescribing physician treating you with the Plaquenil, that medication is designed for moderate to very severe case of rheumatic diseases, any doctor worth half their salt should not be writing that for you.)
    The most important thing you should absolutely do, if you have not already, 1. go to your GP or( family doctor)  fill them in on what you have described here. They will likely give you an order for blood work to determine whether or not to give you a referral to a rheumatolgist. Blood work is ultimately going to be the most revealing as well as infuriating aspect of determining if you have Lupus. 
    Take heart in considering this- while I was not your treating physician then or now; Lupus and other Rheumatic diseased are rarely, if EVER, diagnosed right there on the spot. The criteria just does not work this way. Be encouraged, while you may have had symptoms that day that mimicked Lupus features- it sounds like a classic case of an ER doctor giving you a lifetime diagnosis for an isolated event.
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