Lupus Study-Shocking High # of Wrong Dx’s

neverlupus

from Lupus Foundation of America:  Original Article Here

A Lupus Foundation of America study of over 3,000 adults with lupus found that 46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with this unpredictable and life-altering disease. Additionally, more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological.

The data was included in a cross-sectional study, “Lupus Diagnosis: Process and Patient Experience,” released by the Lupus Foundation of America today at the American College of Rheumatology (ACR) Annual Scientific Meeting (ACR) in San Diego. The study demonstrates the urgent need to shorten the time to obtain an accurate diagnosis – so people with lupus can begin critical treatment that will reduce damage to vital organs, such as the kidneys, heart, lungs and brain.

Previous studies have shown that it takes nearly six years from the time people with lupus first notice symptoms until they obtain a correct diagnosis. Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus – an important strategic objective of the Lupus Foundation of America.

“This study is so valuable because it’s the first in-depth look at the patient diagnostic experience,” said R. Paola Daly, Director of Research at the Lupus Foundation of America. “The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis.”

Through this study, the Lupus Foundation of America sought to identify barriers that impede lupus diagnosis and ways to improve its accuracy. Nearly 40 percent of those with lupus waited more than one year from the onset of symptoms to receive an accurate diagnosis. These findings underscore the importance of providing continuing medical education about lupus symptoms to both primary and specialty healthcare providers.

During the ACR Meeting (November 3-8), the Lupus Foundation of America will conduct on-site Facebook Live interviews with lupus researchers and other health professionals about the findings from their research studies. More than 35 Lupus Foundation of America funded researchers will be presenting on findings from their lupus studies. To learn more about the Facebook Live interviews, visit our Facebook event.

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The #NERVE of THIS NERVE; #Amputation Failed! Not giving up!

The #NERVE of THIS NERVE; #Amputation Failed! Not giving up!

Yesterday I saw my surgeon-the amputation was a fail. The darn median nerve continues to curse my days and sleep. It went five days nonstop. Doc gave me no less than EIGHT lidocaine shots yesterday to shut it down. By the time he was done I couldn’t feel any part of my right foot EXCEPT THE NERVE PAIN. I mean, it practically defies nature. The other possibility according to the million dollar nerve conduction equipment is that there are severely damaged small to medium fiber peripheral nerves in the skin that was used to close up the amputation. Anyway, THIS IS WAR (as my BIL used to say)

End of story is I’m going in for another surgery. I’ll let you know when it is. He’s cutting the median nerve in two new places and ripping out the skin used to cover up where the toe is amputated and stretching what’s left to use. He may have to graft later if it doesn’t take and I get a wound problem. Ah, another risk I’m willing to take-wound problems. Like I said, “THIS IS WAR” and I’m not backin down until this nerve is gone for good.

I know what your thinking but I’m actually very lucky to have a surgeon willing to go thrice trying to help me. This is his last suggestion, after that-he is outta ideas. You’ve got to remember I am a complicated case with circulating immune complexes causing inflammation in my blood vessels that press on nerves and damage them. This is my particular present from lupus.

So…….that’s whats happening. 🙂

“Never doubt th…

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.

I wore my wolf hat a friend made with my lupus sticker button on it yesterday!  Everywhere I went I was asked about LUPUS.  People ARE interested!  Talk about your LUPUS!  The more we stand up and get the word out, the more likely additional funding to find a cure!  Let’s get the conversation started!!!  From the words of The Lupus Foundation of America:  LUPUS, Help us solve the cruel mystery!!!

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Top 5 Ways To Manage Lupus Fatigue

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Lupus Pals – All about LUPUS & Support

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11 Symptoms Used To Help Diagnose LUPUS

Music Video of the eleven symptoms used as a guide by physicians and the American College of Rheumatology to diagnose Systemic Lupus Erythematosis.

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