Chad and I were sitting in the doctors office. I was excited, sure that I would finally have the genetic test that would conclusively show I had periodic paralysis so that I could get into a study. I felt like it was time to get better. With new medications, I just might get my life back.
Dr. Johnson walked in with two medical students and two pieces of paper. He joyfully told us that my genetic test was negative. I definitely did not have periodic paralysis. I was in shock. I questioned it. Couldn’t there be a negative test and I’d still have MD?
Not in my case. If I had it there would be a mutation somewhere on the gene but I had none. No mutations, no chance of periodic paralysis. The doctor seemed to think this was great news but I was still in shock. What was it? Something better? Something treatable? Something worse? Was this why I wasn’t getting any better?
I started to cry. I never used to cry in front of people but the more comfortable I get with myself, the more my emotions just spill out whether it’s happiness or sadness. Poor doctor.
I cried all the way home. I wanted a diagnosis. I wanted to get better. Later on I was reminded that I was on the way to getting better since I’d been treated with the wrong disease for a year and a half thanks to my insurance that didn’t want to cover the test.
The next step is a painful muscle biopsy scheduled for right before Thanksgiving. It will tell the doctor what is going on and what direction we needed to go in.