Went to see my Rheumatologist today. I was able to get out of the car and walk into the hospital- without a wheelchair. I went up to the 4th floor rheumatology clinic and the secretary said it was great to see me walking again. She gave me the questionnaire I’d filled out the other few times- What aids I used (None! I’d been able to stop using the raised toilet seat the night before and had moved upstairs to my own bed.), what I wasn’t able to do (chores…hah, and had some difficulty with stairs, but other than that, I could drive, bathe, dress), and where I had pain (minimal shoulder pain).
When the doctor came to call on me, he was amazed to see me not in a wheelchair and dressed in normal clothes. We went down to his office, and did all the tests he’d done the other times: Pressing up against his hand, holding my arms steady while he pushed down. I was able to do this, whereas last time I hadn’t even been able to lift my arms up. I was able to lie down on the exam table, and lift my legs and hold them up, as opposed to not being able to even lift them. When he had done all the tests, I was able to sit up without the help from my dad or the doctor.
The doctor was impressed with my progress. Hell, so was I. He let me know that the pathologists working on my muscle tissue had found markers for a rare metabolic myopathy. A lipid storage disease- a genetic thing. Neurologists / Rheumatologists in another city were looking into it. Not really the ideal thing I wanted to hear, but I was happy to know that even though I was showing progress, they were still trying to figure out exactly what was wrong with me.
The Holter monitor results showed increased heart rate, but when he took my blood pressure, it was fine. So there was nothing to be worries about. My enzyme levels were much better- almost normal. The blood tests also showed positive for ANA- an antibody present in autoimmune disease, so he said they weren’t ruling out Polymyositis.
Before sending me on my way, he informed me that I could start cutting my steroids by 5 mg every week until I reached 15 mg. He was going to raise my methotrexate dosage, but decided to wait a few weeks before doing that. He also said that I could go to get my blood work done every 6 weeks, instead of every 2! Yay! Give my poor little arm a little break…
