Waiting and Wondering

Monday I received my initial biopsy results and everything looked fine under the electron microscope. This is good news and yet unsatisfying. I can check a few more things off the diagnostic possibility list but still am no closer to knowing what is causing my decline. Now I'll have another 4-6 weeks to wait for the results of tests checking to see if the respiratory chain enzymes are ok. Where I go after that is not clear. This latest doc also thought we should consider chronic Lyme disease which apparently cannot be diagnosed using standard Lyme testing. This was news to me and my partners. I don't recall if he told me how it's diagnosed, I'll cross that bridge if I need to. I was struck by the fact that this is another example of how important info like that is not available or widely known by those of us in primary care. We live in an endemic Lyme area, we need to know this to treat patients correctly. Makes me wonder how many patients have been misdiagnosed over the years due to poor information on the front lines.
As I wait I do have a new decision to face. My gait eval suggests that weakness in multiple muscle groups of the right leg are adversely affecting my ability to walk efficiently and for long periods of time. I've been observing this for months but lacked the proper vocab to explain it to other docs. The PT at the Courage Center did break the overall problem down in her description of my gait. She thinks I would benefit from using a flexible leg brace that fits me from the calf down. It would connect to a foot orthotic via a mobile/flexible pivot at the ankle. This would not make me dependent on the device to walk but would allow me to go longer than my current limit of 40-45 min and might conserve my energy while I'm working. If I wear pants it wouldn't be that noticeable. I'll probably go ahead with this but first I'll talk to Ralph for his input. Two years ago I never would have imagined I would face choices like this. Going to the Courage Center for the gait eval and OT visits helps me keep a perspective on my situation. I see so many people there who obviously have harder struggles than mine so it keeps my pity parties short. I especially feel for the parents who have kids with challenges, that could really be difficult. Such is life- joy and good health can walk hand and hand with sorrow and illness.