Have you been diagnosed with lupus?
Congratulations! No, seriously, I mean it. Congratulations. Getting diagnosed
is a huge step. I was misdiagnosed for six years. Lupus can be really tricky. I
had been tested for it on and off over the years but the blood work never
amounted to lupus. So for six years I was told I had JRA (Juvenile Rheumatoid
Arthritis), Chronic Fatigue and Pain Syndrome, Chronic Migraines...
It started at age fifteen. I was getting terrible
headaches and would occasionally lose my vision for about 30 seconds at a time.
I wasn't allowed to participate in gym (which made me so sad... not true)
because my episodes of temporary blindness made me a liability (freshmen gym is
swimming). Since I was having these weird episodes my mom decided that I should
see an ophthalmologist instead of an optometrist to get a new glasses
prescription. After a few minutes with the ophthalmologist, he told me I had
something called Pseudotumor Cerebri* (latin for false tumor of the brain) and
needed to go to the ER. He said I would be there for a while (at least
overnight) so it might be wise to stop home and grab a change of clothes.
That was the day I received the first of six spinal
taps over a 4 year period to relieve the fluid pressure. The next year I added
Dr. Charles Spencer**, rheumatologist, to my list of doctors (I was seeing a
neurologist and the ophthalmologist). Spencer was also K's doctor, my cousin
with lupus. so we gave him permission to share relevant medical information with
the other. Although the cause of lupus is unknown, it is believed genetics is a
factor and K exhibited more symptoms fairly early on and was therefore
diagnosed before I was.
*Pseudotumor cerebri (also known as idiopathic
intracranial hypertension) is characterized by increased pressure inside
the skull. Intracranial means inside the skull and hypertension means high
fluid pressure. Basically, the pressure of the fluid that surrounds the brain (cerebrospinal
fluid or CSF) is too high. Elevated CSF pressure produces severe headache and
often visual difficulties, which, if left untreated can result in loss of vision or blindness.
(http://www.webmd.com/brain/pseudotumor-cerebri-10678)
**(Doctor Charles Spencer (pediatric rheumatologist) is hands down my
favorite doctor, which as any person with lupus will tell you means quite a
bit. Over the years I've had 4 primary care doctors, 3 ophthalmologists, 3
rheumatologists, 2 neurologists, and 1 neuro-ophthalmologist.
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