So I went to see a PANDAS specialist this week, and I’ve finally been diagnosed with PANDAS. My doctor was wonderful and finally took my symptoms seriously. She even said my mysterious illness from 2006-2007 may have been Rheumatic Fever. And unfortunately, she told me I’m not just having tics, but also chorea, which could explain my strange falls when I walk. The best words my doctor said were, “You’re going to get better.”
Is Looking at My Medical Records Really Too Much to Ask?
This week, I’m going to be seeing three neurologists including one PANDAS specialist. As you can imagine, I’m very nervous but also excited about the possibility of figuring out what has gone on with me for the past eight years. In order to prepare for the appointments, I’ve been trying to get my hands on my own medical records for awhile—with little success. Forgive me, because I need to vent… Continue reading “Is Looking at My Medical Records Really Too Much to Ask?”
I’m no doctor, but recent developments have shown I almost certainly have PANDAS or PANS.
A standard way to see if symptoms are autoimmune-related is to do a steroid burst for five days. The theory is that if inflammation is the culprit, the symptoms will improve with the steroids. Continue reading “Takin’ Roids”
“You’re Just Tired”
So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…
My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds: Continue reading ““You’re Just Tired””
I don’t even know where to start since I last wrote. I seriously think I’m going crazy.
The other night, I got in a really bad way. During the day, I would just sit down and stare into space, because that was all I could do. I had no concentration whatsoever. Whenever I tried to do homework, I found myself just staring, thinking about nothing. I tried to make myself focus, but then I’d just start staring again before I realized I was doing it.
Why I Can’t Stand All These Meds
So, my Xyrem finally came.
For my non-narcoleptic readers, Xyrem is one of the meds used to treat narcolepsy and cataplexy, but it’s a controlled substance with only one pharmacy in the US that makes it. After getting a prescription from the doctor, I had to go through two weeks of phone calls from nurses and pharmacists at that pharmacy. The best part of one conversation went like this:
Nurse: Do you have cataplexy in addition to narcolepsy?
Me: *falls to the ground…*
My 8 Year Journey Into the Wormhole of Rare Diseases
Hello world! Welcome to my recovery blog.
I’m a teenager that has Narcolepsy with Cataplexy, OCD, and another undiagnosed illness that is suspected to be PANS (Pediatric Acute Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus).
I’m writing this blog to raise awareness for my conditions and hopefully, to inspire others to not give up. There may or may not be a cure for my illness, but I’m on a journey to take back my life, and this blog is for recording that journey.
Once upon a time, I was completely healthy and fit. But in the summer of 2006, I came down with a mystery illness that tore apart everything I knew. Continue reading “My 8 Year Journey Into the Wormhole of Rare Diseases”