I've made some other posts to update my visit to Minneapolis, but now the study is over and we're about half way home and stopping for the night.
Back to the hotel and all full up. We're going to watch some TV and relax and then hit the sack.
We met with doctors Utz and Whitley for about an hour and a half this morning. They are still waiting on some tests that will take a few weeks to get the results on, but everything they saw looked fine they said. My MRI looks good and they found some things on my brain that they said they didn't expect, but they don't think it's a problem. The good part is that MAYBE this could be a clue! Who knows, something they haven't seen in other LOTS patients shows up could be a good thing. This is the kind of info they need.
I'm now officially enrolled in TWO studies! One natural history study and the other paperwork I signed is a consent form that gives them permission to share my data with others. Dr. Utz said that they may even use some of my data to write a paper and submit it for publication in some studies or journals!
It's going to take a few weeks to get the genetics reports done, but they are trying to figure out which mutation of the gene I have. Once they do, they want to start me on pyrimethamine. They say that they have been using it with some success. They are still looking at Zavesca too though.
I've got to go back to Minneapolis in September. I've already got an appointment booked. To tell you the truth, I'm excited about starting on the new meds and for the return trip in six months to see if they're having any effect. This has been a stressful but exciting week.