Diagnosed: Hi guys, new to this site. I was... - LUPUS UK

LUPUS UK

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Fats1963 profile image
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Hi guys, new to this site. I was diagnosed with SLE in 2013. I looked back through blood test results and noted my antinuclear antibody in 2005 was very high but no one picked it up. Ver disheartening . You need to ask them to test your anti nuclear antibodies levels. I was told they should be around 80, mine was 680. Took a country town go to actually diagnose SLE. Keep strong and push them for answers.

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Fats1963
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LupusLady74 profile image
LupusLady74

Sorry to hear they missed SLE. Welcome to the site. Hugs and spoons to you.

It happened to me too Fats, I didn't know anything about anti nuclear levels to know to ask them to check them. All I do know is I have been going to the doctor since I was about 25-years-old and complaining about tiredness, then hair loss, and then I experienced joint popping and cracklings, but with all the blood tests and complaining I did I had to come to Texas from Illinois to get an accurate diagnosis.

It's not about region, it's about good doctors. I even had a whole hoax of blood work done in Texas prior to my diagnosis. At the time of drawing the blood I looked at my blood and knew something was very wrong. My blood was difficult to get out, it was extremely thick, and that's what little they did manage to get out of me. By then though I was hobbling around like a cripple! Still, they did not give me a call and reveal that I had lupus or rheumatoid arthritis! I now know they were just looking for sexual diseases even though I told them I hadn't engaged in sexual intercourse of any kind in years! Now I am fifty-years-old with a diagnosis of SLE and it is taking me a while to adjust. I love to garden, walk and do things outside, but now I have to limit my outdoor activities! I live in hot Texas, but I must cover up whenever I go outside, even though I am menopausal! Even if I wasn't, wearing long sleeves in Texas the hot heat is enough to make you fallout! To have insurance and complain for years, but it took twenty something years to finally get an diagnosis! Pathetic is what that is.

AutumnSun profile image
AutumnSun

Hi There.

I totally agree with you. I was lucky and had a very persistent GP who insisted on SLE.

Hope you keep in touch and welcome to the community

Fats1963 profile image
Fats1963 in reply to AutumnSun

Thank you. Went through old blood tests. And my ana was 650 in 2005. It's only taken 9 years to be diagnosed.

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