Prior to my health decline that began in 2010, I had never experienced any major health problems. I felt like I had a strong immune system because when other people around me were being hit by viruses, I could avoid them with strong mental thinking and herbal preparations. So when I began experiencing symptoms that were initially mild I wasn’t too concerned. But then as time went on and the symptoms became worse and eventually debilitating, I knew that there was something wrong in my body that was causing the suffering. Of all the things that have changed and been turned upside down in the years that have followed, that one thing has remained constant. I’ve always known something was terribly wrong.

Between 2010 and 2012 I saw dozens of doctors trying to get help. They would run a few tests, which would always come back normal and then tell me that there was nothing wrong. They offered me lidocaine injections, physical therapy, and pain medications. When I asked for an MRI they gave me an x-ray and pronounced me as “normal”. I had to see several more doctors to get the MRI. Finally one doctor agreed reluctantly. The MRI of my cervical spine showed disc bulges and cervical stenosis which the spine doctor pronounced as “normal”. I asked to see an Orthopedist. The Dr. agreed reluctantly and told me it was a waste of time. The Orthopedist I saw was the rudest Dr I have ever met. She told me in a condescending manner that she didn’t have a “silver bullet” for me, and that I just needed to go to the gym. I found out later that she wasn’t even an orthopedist, but an ER doc filling in as an orthopedist.

I begged to see a Neurologist, and finally saw a Dr. who was willing to refer me to one. When I got to his office, his manner was dismissive and he seemed confused about why I was in his office and wanted to know how I had gotten the referral. Still searching for what might be wrong with me, I showed him how my scapulas had begun to protrude out of my back and that I had a family history of Facioscapulohumeral muscular dystrophy. He told me he thought that was interesting, but not relevent. After a brief neuro exam he pronounced me normal and sent me on my way.

I finagled my way into another Neurologist’s office. By now I knew there was a genetic test for the muscular dystrophy that afflicted my family. I wanted the test. The neurologist told me that I would need confirmation from my cousin with FSHD which genetic deletion she had. They wanted me to produce her medical records. I called her and she started crying on the phone. The neurologist suggested I try calling another time and getting the info. The Neurologist told me the test was extremely expensive and that she couldn’t order it without knowing my cousin’s results. I didn’t call my cousin to confirm her results because I didn’t want to upset her again. Instead I told the neuro that I had confirmed her results and the Dr. agreed to give me the test.

I showed up at the lab and the receptionist told me that the test my Dr. ordered had to be approved by some gatekeeper high up in the system who only visited the lab once a week or so. Finally I heard from the lab that I could come in for the test. I sat down in the chair and the lab tech drawing my blood said, “You must be very special, this is a very expensive test.” “Really?” I thought but didn’t say aloud. I wasn’t feeling very special at all, in fact I was feeling quite the opposite.

The test came back negative which only provided a limited sense of relief. By this time I had missed several weeks of work due to the debilitating migraines I was experiencing three days per week. If I didn’t have FSH Dystrophy, then what did I have?




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