Lupus

Diagnosis Problems

  
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My Personal Experience
By Trina


After the birth of my second baby I noticed I was losing my hair and feeling sort of run down.  I was breastfeeding my daughter and chasing a 2 1/2 year old boy and thought that was to be expected.  Occasionally I would break out in hives for no reason and started having bouts of nausea and stomach pain.  I decided to go to my primary care doctor just to make sure nothing was wrong and he tested by thyroid levels and did an ANA test which is supposed to pick up on autoimmune stuff.  My ANA was negative and my thyroid level came back too high so they did another test.  This time it was too low so they did another test.  The third test was normal so the doctor quit looking for reasons why I was having skin rashes, hair loss, nausea and stomach aches.

I decided that most of my issues were probably from sleep deprivation and the physical demands of breastfeeding so I tried to ignore all my symptoms.  I just figured I would go to the doctor again if they didn't resolve when I stopped breastfeeding.  Sure enough, a year later I'm still have bouts of nausea, increasingly painful stomach aches, hair loss, hives and newly added to the list, my joints would stiffen up and my cheeks would turn bright red after showers or being outside.  I went back to my doctor and he said he could see nothing wrong.  He referred me to a gastroenterologist.  I had an upper GI done and they found inflammation in my esophagus, but no source of the inflammation.  He then referred me to my OBand he did an ultrasound looking for adhesions.  He found nothing so he decided to do exploratory laparoscopy to see if I had endometriosis.  While in there he found inflammation of my small intestine and again no cause for the inflammation. At this point I am embarrassed because I've been seeing all these doctors and all of them say nothing is wrong or parts of my body are inflamed without reason.  I decided to see a new primary care doctor and he did a series of blood tests.  The results from these tests came back with a positive ANA so he referred me to a rheumatologist.  The rheumatologist did a series of blood work, took a bunch of x-rays and performed a thorough examination.  After all the results came in, she said it was likely I was in the beginning stages of lupus but because of my current blood levels of whatever she was looking at was still low (just below the diagnostic threshold) she couldn't officially proclaim it as such.  She also said my thyroid was being attacked by the same autoimmune process and it was just a matter of time before I would need replacement hormones.  She prescribed pain medications.  Since then (that was about a year ago), I have still been having intermittent symptoms but feel better knowing essentially what is wrong.  I am getting yearly physicals and blood work to monitor my blood levels.  Since the treatments for lupus are pretty intense, I am trying to hold off as long as I can before getting an actual diagnosis.  I am sharing all this because diagnosis of lupus can be a long and frustrating process.  If you think something is wrong, keep making your doctor investigate. I had no idea until I started reading about it that you could have a negative ANA and still have lupus.  Or that you could be positive during flares of lupus and negative at other times.  At any rate, I am glad I kept pursuing a diagnosis instead of giving up and worrying constantly about what was wrong.