Why I'm Happy I Received Diagnoses of Neuropathy and Myopathy
Let me start by saying I do not want to be sick. I am not lazy, or trying to get attention. What I do want is a diagnosis, so medical professionals can treat my symptoms, and if possible, heal me. There are so many people who do not understand people with chronic illness and why we want a diagnosis so badly. I want to share my story so I can help other people understand how difficult it is to live with unidentified health issues.
As a young girl, I spent a lot of time during my non-school hours in bed and on the couch. My parents chalked it up to me being a lazy person, but when I would get bursts of energy, I’d be out doing all I could, and I didn’t feel lazy! In middle school P.E., I would always stop running because of sharp pain and a burning sensation in my chest. Again, I was labeled as lazy and told to work through the pain. (Twenty-five years later, we would discover I had asthma.) My parents had me in soccer and softball for several years, but I would get worn out quickly, begging to be benched after a few quarters or innings. As you see, there was a pattern. High school went on the same way, only with the emergence of back pain on top of everything else.
I started falling down in my early 20s. People just thought that was funny. “Look how clumsy she is,” they said. Everyone thought I was both lazy and clumsy. I had x-rays and all the standard blood tests, but nothing was showing up. After I had a couple of children, my energy plummeted, but after seeing a variety of doctors, and with a chart thicker than a Harry Potter book, I still had no diagnosis. The medical and family consensus was that I was fine, lazy, and maybe a little depressed. I was a little depressed; my body was betraying me and I didn’t know why. Not only that, but no one who was close to me believed what I was saying.
In my 30s, the pain became more intense. It was difficult for me to get around, and I was becoming more unsteady. My pain was mostly in my back, but slowly creeping in a little bit everywhere else too. “Where did it come from? Why was it there?” Those were my questions. What answer did I get? “You must want drugs.”
Through all of this, I would argue with anyone who told me to take so much as an aspirin. I was so anti-any-medicine that wasn’t absolutely life-saving that taking strong pain killers was out of the question. I wanted a permanent solution, not a temporary fix. Again and again and again I was asked, “Why do you want something to be wrong? Why do you keep looking for something to be wrong with you? Why can’t you just do what you’re supposed to do like everyone else?”
I was told by those close to me, “Obviously if the doctor says nothing is wrong, then nothing is wrong.” And, “I’m certainly not going to help you get things done when you are perfectly capable of doing them yourself. Stop being lazy and snap out of it!” But more symptoms kept emerging, and I just kept asking questions, and going to doctors, and not giving up. It’s not easy to keep that up when you feel miserable.
A good personal support system helps not only physically, but emotionally as well. When I was 40, I married a soldier. He not only fought for our country, but he fought for me. He went to doctors with me and explained things when I couldn’t, he helped me to remember to take my medicine when I was too tired to remember by myself, and he always had faith that we would find help and I would get better. With his help, I found a pulmonologist who discovered that I have asthma and sleep apnea. Treating those helped some of my symptoms, but there were still several things going on with my body that no one could figure out.
In my early 40s, my husband got sick with what we thought was a cancerous kidney tumor. I didn’t want to tell him that I’d fallen down the stairs twice in one week, but my sister-in-law did. He immediately sent me to the doctor, where I got an MRI of my back, and they finally found something. Ironically, they didn’t actually find it, they said it was still there! A diffuse atrophy that was found in my back seven years earlier that no one ever mentioned to me. The muscles outside of my lower spine had completely atrophied and been replaced by fat. How could this have happened? Why? We didn’t know, but it explained the pain, weakness, and falling I’d been experiencing for years.
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.
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