Myasthenia Gravis
My story and struggle with Myasthenia Gravis
I remember looking into the sky one night and asking my friend Brian if he saw two moons sometimes instead of one? Meaning does his vision ever start to go double just slightly? Weeks later my eyelid started to shut, my muscles weakened and I was having problems swallowing. After my dad noticed he raced me to show my mom. Mom freaked out and within a day or so I was in the doctors office. I remember watching OJ Simpson on TV in the waiting room when he was found innocent. Seconds later they called my name to have an MRI done. At this point we were trying to figure out if I had a brain tumor or Lou Gehrig’s disease. After the MRI it was off to another series of tests. We found no tumors, no lou gehrig’s thank god. Next was a EMG which zaps parts of your body to measure nerve impulses and motor neuron signals. Very fun. I remember getting an EMG done when the guy who tested me told me that I had the best possible outcome in the family of muscular dystophy, myasthenia gravis. It’s a non progressive auto immune muscle disease in which there is no cure. I started taking mestinon which is the safest of all the meds available to help control symptoms. Unfortunately it didn’t work at all. Next I was put on a high dose of prednisone. Prednisone is a steriod that purposely destroys your immune system so it doesn’t attack itself anymore. So not only did I have one eyelash that was white and the other eye was lazy, I was seeing double vision and I became super chubby because of the water retention of prednisone. In high school kids were meaner and made fun of me. I didn’t mind though, I joined the fuck up musician/ artist crew who accepted me for being a freak and bought this domain name www.whiteeyelash.com to turn this weakness into a strength. I was worried I would never be able to play drums again so I picked up the guitar and the banjo. I soon had a very serious surgery called a thymectomy where they removed my thymus. Just for some reason this seems to help with myasthenia. They say you can’t tell for 5 years after the surgery… I don’t think it worked for me either. Years past and I tried lowering my meds and at times I felt I was almost in complete remission, but soon raised the dosage up. For the next 15 years I stayed on prednisone. I didn’t want to switch to the next meds because they have more serious risks like cancer. Prednisone has osteoperosis, diabetes, and liver risks. To me it was worth being on it as long as I could because it didn’t have cancer risks. But now as my symptoms flair up every few months I’ve just switched to a newer treatment called cellcept. It’s used in combination with prednisone to help level out my symptoms and hopefully make me more stable. Looking back my symptoms aren’t as intense as when I was first diagnosed but my vision gets really really bad sometimes. I’m hopeful I will feel better soon because a word seeing double is a cursed world. I will say this though: You never realize how lucky you are until you’re brought down to nothing. That’s why I don’t understand why people smoke cigs? Smoking’s a choice, myasthenia wasn’t. I definitely wouldn’t have chosen myasthenia if it was a choice. This disease has made me take a step back and be grateful for what I have. I may not be perfect but I’m alive. For now that’s good enough.
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