Posssibly lupus?

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Kodama95
New Member


Date Joined Jan 2016
Total Posts : 2
   Posted 1/24/2016 3:58 PM (GMT -6)   
Hi my name's katelynn. I have been seeing rheumatologists for about 3 years now. They suspect that I have it, but the only test that comes back high is the ana test.
I have been prone to utis and yeast infections, I get swollen lymph nodes all of the time, I have bad muscle and joint pain, I am losing hair, I have mouth ulcers, I am very intollerant to heat, blurred vision, rash on arms when outside in the sun for too long, I am very tired. Every time they take a urinalysis it comes back,with protein and blood in it, but no infections and my kidneys are fine. I am always sick, and get many headaches. Also, I have gastrointestinal problems and hashimotos thyroid disease. I am going to see a new rheumatologist soon, so maybe he can find something. All I know is, is that I am sick of feeling sick. What do you guys think?

Post Edited (Kodama95) : 1/24/2016 3:09:37 PM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/24/2016 10:21 PM (GMT -6)   
Lupus is diagnosed with a list of 11 indicators. You need to meet 4 of the 11 indicators to be diagnosed with lupus. If your doctor is only looking at blood work then he's not a well informed doctor.

I hope your new rheumatologist will be following the guidelines for diagnosing properly.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 1/25/2016 4:23 PM (GMT -6)   
Hi there! Welcome to healing well forum! I agree with your choice to see new rhuemy! You need to find one you feel listens to you thoroughly and spends plenty of time with you each apt. Are you on any medications to treat lupus or an autoimmune disease similar to Lupus? When is your appointment with your new rheumatologist ?
Amy
Lupus Moderater

Kodama95
New Member


Date Joined Jan 2016
Total Posts : 2
   Posted 1/25/2016 4:30 PM (GMT -6)   
I am not on any medicines...my old doctor told me that She didn't want to put me on anything due to not diagnosing me with anything.

ursg8243
New Member


Date Joined Nov 2015
Total Posts : 17
   Posted 1/27/2016 1:53 AM (GMT -6)   
Wow Kodema95, sure sounds like Lupus to me! I don't even have half of your symptoms and I've been diagnosed with Lupus.

I was in denial for months because all I have is swollen hands, feet and knees, no joint pain but extremely painful tissues. I feel like my mouth is always raw but that's about it. I thought I cant have lupus because I don't have all the symptoms? Right? Wrong! Not everyone has all the symptoms. So now after seeing 4 specialists the last One actually showed me and explained the blood test results.

You're wrong couchtater they can do more specific tests for Lupus because apparently I had ANA marker so they sent it away again to find that I might have Lupus and 4 other different autoimmune diseases but the third test showed a marker that 95% of Lupus patients have. In other words they narrowed it down to Lupus that way.

I would agree with everyone else in telling you to get a NEW Dr. I saw 11 in the past 8 months before they figured it out. Good luck and hope you can get some real answers.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 1/28/2016 7:09 AM (GMT -6)   
I think what couchtater meant to say is not one single blood test will tell you that it is lupus. Yes, they can do more labs to rule out other illnesses and other labs that can point towards lupus but it doesn't mean lupus. I have had the lupus antibody test ran on me and i am negative BUT my kidney biopsy confirmed it was indeed lupus. Labs can lie and send false positives and false negatives. Hence the one test that came back 95% positive for lupus...what about the other 5%? I know people who have a negative ANA and all other labs rule out lupus but a biopsy of an organ/skin confirms its lupus. That's why lupus is so hard to diagnose!

When getting diagnosed they look at labs AND symptoms patients are having.

I agree with couchtater, you don't need a doctor only looking at lab values. You need one that looks at lab vales and your symptoms!
Amy
Lupus Moderater

yehyeh
New Member


Date Joined Jan 2016
Total Posts : 8
   Posted 1/28/2016 7:19 AM (GMT -6)   
hi amy
i also same as yours. my lab of ANA and others lupus indicators show negative.

However, my kidney biopsy cfm i am lupus nephritis class iv

well, i still remembered while i was flare in the 1st time before i diagnosed, i had fever, mouth ulcer. leg swollen, fatigue, loss weight and no appetite. i think all these symptoms of lupus.
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