Oh good, bloodwork I can't understand.

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ToniHA
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/24/2011 1:06 PM (GMT -6)   
I am 24 years old, and I've visisted numerous specialists over the years and been passed around for a wide range of vague, seemingly unrelated symptoms. For a while, it was thought that I had MS because an ANA came back negative and MS seemed the only other explanation. But my last MRIs came back clear. I was sent to see the director of the neurology department at the kirklin Clinic here in Birmingham. He sent me to have 15 vials (not kidding) of blood taken, and he ran 15 different tests. This time, my ANA screen came back ">1:80!" Yes, they added that cute exclamation mark. It gives the normal range as <=1:80 - . My #ANA titer came back as "homogeneous 1:1280 or greater titer". My C-reactive protein came back high at 12.78. My ESR is 20, higher than my last elevated sedi rate. But my anti-ssa, anti-ssb and anti-ttg all came back within the normal range. My RF was negative. So this neurologist is sending me to a rheumatologist, but I can't get in to see the guy until October 14th.  I'm guessing that their best guess will be SLE, and it fits my symptoms. I am always fatigued, with extreme muscle weakness, I always feel like I have deep bruises and I get hives and rashes (though none of my face). I had an outbreak of widespread petechiae about two years ago, and the migraines are severe. Mostly I get the hives and itching on my joints, especially my hands. I didn't think I had sun sensitivity, which seemed like a common symptoms, so I thought I was off the hook for SLE. Then I went to Florida earlier this month and spent about 4 hours in the sun by the pool. That night I started getting a sore throat, and the next morning I felt like I was getting strep (which I used to get a lot when I was younger, but haven't had since I had my tonsils removed). It lasted for a week, and it morphed into some kind of bacterial infection that took 20 days of antiobiotics, a Z-pack and a steroid shot to get over. I thought it was odd that sun exposure would cause a sore throat, but it seems like that's a common symptom for a flare. As for my other symptoms, they never go away. I never have periods where I feel even slightly good. I have a friend with SLE and she says that she has never been in remission either, and that it's different for everyone. Mostly I'm concerned because if SLE is what's responsible for my symptoms then I've had it untreated for about 6 years and it's gotten progressively worse. I'm kinda worried for my kidneys. I've never had a urinalysis, but I did read that left untreated for more than 6 years, SLE will cause serious kidney problems in like 75% of cases. I'm not even sure what the signs would be for that, I would think a doctor might have told me what to watch for in case something happens before I'm diagnosed and treated, but nobody has said anything. I do have unexplained lower abdominal pain on my right side, and I have for the past four years. They've checked gallbladder, intestines, I've had ultrasounds and colonoscopys but there's never been a cause found. I know SLE is different for everyone, but is that even a common symptom??
 
All info is appreciated, thanks! 

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted 9/24/2011 6:54 PM (GMT -6)   
Hi,
The 14th is not that far away. If it is Lupus then you are going to the right specialist. Bring a list of your concerns and questions and then right down what they say. The rhumy will order all kinds of test as well. I have lupus and at them moment no kidney issues. (I am 42 and went years without a diagnosis.) It effects everyone a bit differently.

I live in Florida and only do sunsets on the beach and pre dusk swims in the pool.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/24/2011 8:05 PM (GMT -6)   
If you have to go outside during the day make sure to coat yourself in broadspectrum sunscreen and uv protective clothes. A uv protective hat is good too.
I'm a sunsensitive and fluorescent light sensitive person. Too much of either makes me itch terrible and feel ill.
Joy

Kel84
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 9/26/2011 1:40 AM (GMT -6)   
I know exactly how you feel about being sent around to multiple doctors for seemingly unrelated symptoms. While I have a positive ANA, all the other tests related to Lupus came back negative, so it's all still up in the air... I've been to the Mayo Clinic, Vanderbilt, and to at least 40 doctors over the last 10 years trying to figure this out. I also don't have swollen joints, which ruled out Lupus to the rheumatologists I've seen... even though I have a million of the other signs and symptoms and related disorders. I also had an issue with the sun recently when my entire back broke out in a horrible rash of raised, red bumps for no apparent reason... I wasn't even sunburned. I hope they get this figured out for you ASAP... but just know, you're not alone in your confusion :-)
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