My Personal Experience
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.