On January 23rd, I finally had my appointment with the Gastroenterologist. He was very nice and he got right down to business. The reason for the referral was the high liver enzyme levels in my blood. He was very thorough and had lots of questions. My mother was with me. While trying to rule out different liver conditions, the doctor had a few questions concerning sexual history…awkward questions to answer when your mom is sitting right there! I had to suck it up and answer…turns out, the questions were to rule out Hepatitis. The questions all could have been avoided had my doctor sent over all the blood work results. How tragic. Hah. Once I let him know that I had been tested for Leukemia, Hemochromatosis, HIV, and Hepatitis, his focus shifted a bit. He asked my mother if I always held my head at an odd angle. I explained that my neck always hurt and I had a really hard time holding it up properly. He then asked me to cross my arms over my chest, and stand up. I laughed, and told him it wasn’t going to happen- I needed to use both my arms in order to push myself up from the chair.
The Gastroenterologist decided to do a physical exam, and came around from the desk. Once he realized that getting up was really difficult for me, he was on the phone. At first we had no clue who he was calling. As he waited on hold, he asked me a few questions… “Do you ever feel like you’re telling your legs to move, and they’re saying “no”?” For the first time in the two months that I’d been going to the doctors, I finally felt like someone knew what was going on. As far as “light bulb moments” go, this was one of them. It was exactly what I’d been trying to explain to my mom when we were at Zellers. He explained that the “liver enzymes” in my blood could actually be “muscle enzymes” signifying muscle breakdown. He made several phone calls trying to contact a Neurologist. Once he got on the line, I could hear him telling the doctor “Possible case of Polymyositis…she’s only 23…very limited mobility”. This was the first time I’d ever heard of Polymyositis. Once he hung up the phone, he explained that he thought that I had a rare auto immune disease and had been contacting a Neurologist as it was not his specialty. He said that he was going to put in a referral to see this other guy and they would contact me. My mom asked if she should still be encouraging me to go up and down the stairs and lift weights. His reaction was an immediate “No stairs! No weights!” He said I shouldn’t be trying to go up the stairs and that my parents should move my bedroom to the main level. He also said that the weight lifting would speed up the degradation of my muscles. He sent me on my way with a requisition for blood work.
That was the first appointment that I left feeling like maybe we were going to start getting some answers.
Within half an hour of arriving home, the Neurologists secretary called: I had an appointment for Tuesday at 7:30am. They also had a list of tests to add to my requisition form to have done on Monday. I was shocked. Two months to get an appointment with the Gastroenterologist, and here I was with a Neurologist appointment in a matter of days. That night I enjoyed a glass of wine with supper to celebrate being off medications and finally getting some answers. The first drink I’d had since early November and what would be my last for quite a while…
