Help Please! I think I have Lupus but my doctor does not

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Tired in Hawaii
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 12/27/2011 7:56 PM (GMT -6)   
Hi - I am new to this forum. I have had two ANA tests 3 months apart, both came out at 160. My doctor says it is nothing to worry about. He told me I have osteoarthritis. My left should started hurting about 8 months ago, then thumb joints, now its also the other shoulder and both elbows and back. The joints hurt so bad it wakes me up at night. Doc gave me pain pills and some sleeping meds. All this started about a year ago. First thing that happened, I somehow lost 25 pounds, but was not trying. I used to try to lose weight but couldnt even lose a pound. I was 155 now I am at 130. I am 53 years old. Some days I am fine, other days I am so tired I need to lay down. I was never like this before, always on the go. I have alot of stomach problems too, doctor gave me some stuff for acid reflux, but every time I eat, I get a stomach ache etc. I feel sick alot too, not really sick, like I have the flu, just kind of bla, out of sorts and nauseated.the doctor said that I dont have the Mylar rash, therefore I dont have lupus. I also feel like I am in a fog mentally sometimes. Anyway, I really would like to understand the ANA thing a little better. Like I said the doc said it is fine, but I keep seeing things on the internet to the contrary. any help would be greatly appreciated, thank you 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/27/2011 8:27 PM (GMT -6)   
Was it 1:160 titers?

I'd try a different Rheumy. It's hard to get a lupus diagnosis because lupus is a mimic. Not all lupus patients have the butterfly mylar rash. My whole face turns red during flares.
Keep trying with the doctors and don't give up.
Joy

Tired in Hawaii
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 12/27/2011 8:52 PM (GMT -6)   
Thank you for your answer, the blood test says: anti-Nuclear AB, Serum 160 Homogeneous and Speckled Pattern. The "normal" coloumn is marked = or< 40. Then it has a colomun that is to "flag" something and it is maked high. The doctor I have is a GP not any kind of specialist. i was told by the doctor that the 160 part means 1:160 titers. I am so confused. Do you know if the 160 is high or ?? Thank you

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/27/2011 9:49 PM (GMT -6)   
It's somewhat high. A titer of 1:80 is positive and 1:160 is twice that. That means they had to dilute the sample twice to get a negative. I score a 1:320 titer, which means they had to dilute it 3 times. Mine is considered moderate SLE.
You do need to see a rheumatologist to get the Lupus diagnosis. A GP can't give a definite answer of Lupus. I'd get a referral and get a full workup done from the Rheumy. Mine involved hundreds of questions and 11 blood tests.
The doctor put me on plaquenil, mobic and tramadol. It has helped the fatigue and aches. Mind you I still get tired and achy but nothing like it was before. I still have to have bloodwork every six months to be on the lookout for changes. :(
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/27/2011 10:25 PM (GMT -6)   
You need to see a rhuematologist. They are the doctors who specialize in lupus.

Here is a good website for you to review and you can also find a rhuemy in your area...

http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/lupus.asp
Amy
Lupus Moderater


dialysis from lupus nephritis

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 1/4/2012 9:47 AM (GMT -6)   
Your GP is crappy. Go see a specialist. No malar rash DOES NOT mean you can't have lupus!!!
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Candesartan 4 mg
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