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Positive ANA and no answers

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Lupus
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Posted 5/7/2014 7:04 PM (GMT 0)

 Hi My name is Shelly! I have been sick off and on all my life. Had a positive ANA Jan 2013 that was very low @ 1.16. Since then I have had numerous rashes and my asthma has been acting up. Now I just feel bad every where can't explain it. The biggest problem is when I am walking I feel as though my legs are going to give out from under me. They tested my ANA again and now its a 1.640 with Homounous and speckled pattern and have had blood in my urine the last three time they have checked it but no infection. I have also had swelling in my legs and feet for months now and was put on a fluid pill. Now my WBC and RBC are elevated.The Rhuematologist said to follow up in three months. I am worried in three months I am going to feel even worse. Not sure where to turn. 

Posted 5/7/2014 9:14 PM (GMT 0)
Sounds like he's in a watch and wait mode. If you feel worse call him right away.

Has he put you on any medication?
Posted 5/7/2014 10:22 PM (GMT 0)
No just fliud pills for the swelling and asthma medications. Then every time I get the rash I get a shot of steriod and a 6 day pack. Which usually makes me feel a little better.
Posted 5/7/2014 10:38 PM (GMT 0)
My rheumy likes to stick with the steroid packs too. He's trying to keep me off the constant effects of long term steroid use.
I take the lasix pills too for my swelling.
Posted 5/7/2014 10:48 PM (GMT 0)
So is that all they do treat your symptoms. Then what wait till it start cause more damage to your organ? Just confused on what the Rheum does. I thought there would be something they can give me to slow the progression. Just worried since I already have blood in myurine that it is effecting my kidneys.
Posted 5/8/2014 12:44 AM (GMT 0)
Generally Rheumies prescribe Plaquenil to slow progression. Not sure why your Dr wouldn't be giving it to you!

Have you read about diagnosing by having 4 of the 11 symptoms? Maybe the Dr isn't thinking Lupus -- not sure if it would help you if this isn't something they are considering.

Check out diagnosing lupus link below.
Posted 5/8/2014 4:57 AM (GMT 0)
I do take plaquenil which helps a lot too.
Posted 5/8/2014 8:14 AM (GMT 0)
My rheumatologist ordered blood work, arthritis series xrays, and bone scan during my first and second visits.
Here's what you can do to help your Dr help you. Keep a lupus log of all symptoms and pain levels. How many joints hurt? Does anything make them worse? Any joints red and swollen? How long am I stiff when I wake up? Minutes, hours, all day?
There are smartphone apps to help you record this info and some may even email your data to your Dr for you.
Lupus can affect any/every part of your body. Be prepared for each visit. I like to type up my questions and observations so I can have a digital record. Feel free to ask if there's a specific med or combo that could help ease your symptoms. I found it easier to group my symptoms when I'm being evaluated for certain issues.
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