Matt,

First, I want to say what has probably become obvious...you've touched a lot of us moms out here; especially those who have sons. Your dedication and desire to stay informed is really incredible and of course, that reflects back on your mom. I know all families love one another but rarely do I see it expressed this way. Kudos!

Anyway, all mushiness aside, it sounds like your MDS is on the right track. If she doesn't have PD, that dosage would not hurt her, so it is a relatively safe way to put a check mark in the "unlikely" PD column. Here is what I would do: look through your journal entries and prepare a table based on the different dosage levels of Sinemet; and create column headings for symptoms and check off each that responded to various levels of levodopa. Note: any things that seemed to worsen upon taking a dose. Take back to your doctor and ask if it could be something related to her surgery? She had spinal surgery, correct? Since her symptoms emerged after that I would start to question possible neurological consequences. We all have noted that PD can emerge after major surgery. However, most people with full blown PD show dramatic responses to levodopa.

Still all this tells you only what she DOESN'T likely have; it's a diagnosis or undiagnosis by exclusion. It happens with at least 30% of us, and that is a pretty high number. Now maybe is the time to push for a PET scan? These roughly measure dopamine levels in the brain but generally used in research; one is used routinely in Europe, while here we are expected to pay out of pocket. If you can argue that it will cost just as much to send your mom to four more doctors who still won't be able to tell her what is going on, then they may cover it or at least par of it. You'll be able to confidently eliminate PD, and move onto getting your mom a more accurate diagnosis and a treatment that works for your mom.

Laura