Why I’m Happy I Received Diagnoses of Neuropathy and Myopathy
I saw several neurologists. My second one actually told me I had too many symptoms and had to pare down my symptom list for him to be able to help me. “Which symptoms are the right ones?” I cried, but he didn’t know, so it was time to find another neurologist. It is so important for patients to keep searching until they find a doctor who listens to them. If I had listened to the first doctors, I might not be here today. I was misdiagnosed and put through risky treatments that didn’t help, and even a major surgery I didn’t need.
I finally went to a new doctor, my eighth neurologist, who sent me to another neurologist 300 miles away at a medical center that specializes in rare neuromuscular diseases. Finally, the wrong diagnosis was officially ruled out. We also found out answers to the health questions I’d had for years. I don’t have one neuromuscular disease, I have two: neuropathy and myopathy. That’s why I had too many symptoms. That’s why none of it made sense. That’s why no one believed that I was telling the truth. It seemed like too much. Like I was making it up.
We now have names for four out of five of my main diseases: asthma, arthritis, sensory neuropathy, and sleep apnea. The fifth is idiopathic myopathy for now. That means I have a muscle wasting disease and no one knows the cause. I’ve had medical testing, the likes of which I wouldn’t wish on my worst enemy, to get to the root of it, but we’re still waiting for the final results. If they’re negative, it means my disease is so rare, it hasn’t even been discovered yet. But my ninth neurologist has done the testing necessary to know I have a serious disease. My body is like a snowman in February; the thaw is coming, we don’t know when, and little bits of me melt away as we wait.
I don’t want to be sick. I don’t want to have an illness. But I do. And because I have fought to find someone to believe in and help me, I have found answers and now I have help managing my pain and fatigue. I still don’t know what’s causing my muscles to atrophy, but in July 2016 I found out that I have neuropathy and myopathy. That’s where most of my system-wide pain is coming from, that’s why I fall, and the muscles that are left work so hard I get fatigued doing the most mundane things.
I’m very happy to finally have a name for what’s been happening to my body for years. I’m not happy because I’m chronically ill. No one wants to be chronically ill, but we do want to be helped. And that’s what a diagnosis does. It helps us get the treatment we need, and live happier, more productive lives.