As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”
“Oh, I’m just taking a short trip and then going home and resting,” I told most people.
But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.
Continue reading “Bring Me Back”
Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.
If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?
Continue reading “What I Learned from Losing My Wallet”
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.”
Continue reading “I Officially Have PANDAS!”
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”