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Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 9/22/2010 2:54 PM (GMT -6)   
Hi everyone. This is the first time I have posted anything here. I could use some advice... my first positive ANA test was in 2002 and I was referred to a rhumy. He just blew me off. The second positive ANA was in 2008 and my PCP said it was no big deal and not to worry about it. At the time that these first two were done I felt pretty good. But a couple of months ago I started feeling really bad... constant headache, joint pain everywhere, horrific leg cramps, so much pain in my lower back that I cry all the time, and the fatigue is the worst of it. I truly think I could sleep 18 hours a day. I work full time and commute 50 miles a day. The drive home is frightening because Im so tired. My PCP put me on Elavil and Vicodin until I can finally get in to see the rhumy. That has taken 3 months, but I see her in just a couple of weeks. My first ANA result was something like 1:150, the second 1:623 and the final one from a couple of months ago was 1:64. I have no idea what those numbers mean and my PCP is of no help to me. She said the lower the number the worse the disease and she would state her reputation on it being lupus. (Needless to say I will be getting a new PCP).
With the following symptoms, what do you think?
Constant muscle/joint pain (it never stops), constant pounding headache, fatigue, some hair loss, confusion/dizziness, I get light headed a lot, I find it hard to focus. These are just the main problems. I am only taking one vicodin a day (5mg) and one Elavil at night (50mg). My symptoms are way worse when I first get up in the morning.
Im terrified to find out what this is. Especially since I have had 3 ANA tests and they have ALL come back positive. And the first one was over 8 years ago! This is really starting to affect my work and I cannot afford to lose my job. Any advice is greatly appreciated!

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 9/22/2010 4:15 PM (GMT -6)   
I am glad you are seeing a rheumy. The PCP is incorrect, the higher incidence of ANA the more likely the disease is more active. 1:64 is low, and in some places is considered a negative ANA. The blood panel "for lupus" includes sever tests for inflammation as well as ANA. And despite that, lupus is diagnosed as much by symptoms as anything -- there is NOT a definitive blood test. But ANA can indicate a lot of things, not just lupus.

Please make sure to start a list NOW of anything you notice and take it with you to the rheumy. There are a lot of better treatments for your symptoms than Vicodin & Elavil!!! (Personally, Vicodin has a tendency to put me to sleep, which certainly doesn't sound like it'd be helping you.)

Hang in there
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 9/23/2010 10:42 AM (GMT -6)   
Thanks Lynnwood. All these tests are so confusing and frustrating. I just hope when I finally do see the rheumy that they can put a name on whatever it is that I am going through and find the right treatment quickly. If in fact this is lupus and I am going through a flare, it has lasted more than 3 months. Some days I just want to stay in bed all day.
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