Ok so, I started PT and OT and it had been going GREAT! I love Aqua Therapy and it feels wonderful to be up and moving around and using my muscles. Unfortunately the past two appointments I haven’t been able to get in the pool. The first time I was having severe gastro-intestinal issues, and this past appointment my Dysautonomia went haywire. My blood pressure was elevated and my heart rate was too high. I sat there for about 15 min with my PT checking my vitals every 5min and eventually sent me home. I’m hoping it’s only a thyroid issue, my previous GP appointed resulted in elevated TSH (thyroid hormone) levels and I had it rechecked yesterday. If it is the thyroid it’s an easy answer… synthetic thyroid therapy. If not… I supposed it’s back to the cardiologist. I should find out in about a week, hopefully before Christmas.
My MRI results of my C-spine and brain were “normal,” I use the quotes because I know for a fact that there are some abnormalities, but not significant ones to a general neurologist. Someone more versed in EDS and Chiari would know what EXACTLY to look for. I’m going to seek a second opinion, I think. My neurologist still wants a Thoracic and Lumbar spine MRI and is talking to the sleep specialist about getting me a sleep study to check for Sleep Apnea, another “fun” thing that runs rampant amongst EDSers.
On a happier note, I am scheduled to be evaluated and fitted for a new awesome wheelchair on Jan 7th! After talking to the technician it looks like I will be getting a power chair with tilt function. He’s also going to help me with constructing a ramp outside my house and other practical things. Most likely an inside car lift for our Outback as well.
We’ll see what happens…. It sucks when there isn’t even enough energy left in me to play around on the computer.