Saturday, November 24, 2012

Have you been diagnosed with lupus?

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. ( 

**(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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