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maryc3
New Member


Date Joined Jan 2014
Total Posts : 2
   Posted 1/25/2014 8:31 AM (GMT -6)   
So, I'll give you a little bit of insight as to what's going on. I'm 16 and, over the past 4 years, have been showing a lot of signs of lupus, including extreme fatigue, joint paint, light sensitivity, pretty severe Raynaud's with lots of blistering, redness over my nose and cheeks, migraines, and round, brown rashes on mainly my neck and shoulders with raised edges after being exposed to sunlight. (They look kind of like ringworm.)

I got my ANA tested which was positive at 1:320 homogeneous, and then was referred to a rheumatologist who ordered further blood work, such as anti- dsDNA, all of which came back normal. With all of these normal results, despite my symptoms and large family history of autoimmune problems (Everyone on my dad's side of the family has RA, a few have lupus, and my grandma on my mom's side of the family has Scleroderma), he pretty much completely ruled out both Lupus and arthritis, saying that, because the blood work was normal, I'm fine. He then proceeded to blame my joint pain on being double-jointed (I'm only double jointed in my arms, which confused me a bit... Why would my knees be hurting if only my arms are double-jointed?), my Raynaud's and blistering on sweating too much, my neck and shoulder rashes on tinea versicolor, my light sensitivity on a psychological problem, the redness on my cheeks and nose on rosacea, and my fatigue on being a teenager.

I don't mean to call my doctor wrong, as he definitely does know more than me, but... I just don't know what else would be wrong with me. Today I even found myself having to take a 17 hour nap after only being up for 4 hours after sleeping for 10 hours. I've been avoiding the sun like the plague for 4 years straight (I'm taking online school for this reason. I tried out public school for a few weeks this year but had to switch back to online after experiencing constant migraines and nausea. I once even had to go home when things got really bad after going outside on a sunny day for a science project.), I have to wear dark sunglasses indoors, and I can only play the piano for around 10 minutes before my fingers start to get mad at me. I'm so frustrated. What on earth do I do?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/25/2014 9:06 AM (GMT -6)   
Some rheumies are just clueless!! I suggest a second opinion! Go to www.lupus.org and find the local chapter closest to you. Then call that chapter and find out which Drs are on the local advisory board. These will be local Drs who have specific interests in Lupus - they will be educated enough to know of the "4 of 11" rule for diagnosing Lupus.

Check out the 11 symptoms of Lupus while you are on the website!

Best wishes, let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

maryc3
New Member


Date Joined Jan 2014
Total Posts : 2
   Posted 1/25/2014 10:09 AM (GMT -6)   
Thank you so much for the suggestion! Definitely going to call on Monday.

And I checked out the list; have 6 of those symptoms!

Once again, thank you!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/25/2014 5:17 PM (GMT -6)   
I would definitely get a second opinion. Hang in there!!

Laura
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