Hope in the New year

I've had much to think about in the past few weeks. It was suggested that I may have a mitochondrial cytopathy and I was referred to Dr. Cohen in Cleveland. While I worked on that lead my husband found a local consultant. This came about in a strange way. Ralph was doing a labor induction at a hospital where he trained and ran into a former colleague from the ER. That doc is now a VP in our health system and when my husband informed him of my situation he gave Ralph the name of a pathologist who is interested in this group of illnesses. That person referred us to a physician who is actually based in Colorado Springs but he also works out of Gillette hospital a few days each month. Ralph tracked him down and spoke with him about my case. I'm now slated to see him on the 12th with possible muscle biopsy on the 14th.
This is quite a break for me but it demonstrates that the health care system often leaves it to patients to find the right contacts. I have advantages that others lack because my husband and I are players in this set-up. I'm not sure how others break through the walls that can keep patients out. As I visit web sites I sense many patients are taking advice and making contacts through medical chat rooms. There has got to be a better way to organize this process.
After being rebuffed by so many neurologists I'm actually nervous about the appointment. I worry that he won't think I need a muscle biopsy. I wonder how biopsy sites are chosen; I'm hoping he chooses the site based on physical exam findings. I, and my therapists, know which muscles are weak. Will he listen carefully to my observations or rely solely on his exam or will any muscle do?
If I have a mitochondrial cytopathy I wonder if he has any advice that will help direct my therapy. I've been trying so hard to get stronger and regain function. I am frustrated because I'm not seeing better results. I've been trying heavier weights with fewer reps but I'm not making much progress and am getting injured a lot. My left shoulder and upper back muscles hurt all the time, sometimes to the point that I need to take tylenol #3 and/or wear my clavicular brace. Working my right leg harder at leg presses has led to days where I can't fully extend my right knee. I'm aware of the "no pain, no gain" philosophy but I seem to be getting the pain without the gain. Bummer for me.
Well, it's a new year. I hope it brings me a diagnosis and a treatment plan that is truly helpful.