Wednesday, July 17, 2013

UCLA Study

Well I head to LA next week to start the trial so I thought I would do a quick blog about it. Back in April, someone on FB posted an article about this study at UCLA. They were looking at estrogen and MS. (This is the article http://www.westsidetoday.com/n9317/new-multiple-sclerosis-study.html ) Basically, women with MS tend to go into a remission during pregnancy, which is strange because they are off all of their MS drugs. It turns out that a form of estrogen called estriol is made by the placenta, possibly causing this remission. This study is giving estriol (or placebo) in pill form and studying the cognitive effects it has on the patient.
Now over the years I had talked with many people about this remission and why aren't there any studies with estrogen, so when I read this article, I got excited. Here it was! Finally! It was a Saturday so I left a message and the call was returned on Monday. She wasn't sure if they would accept me because of the distance. I assured her that wasn't a problem on my end. there is a direct flight out of Kelowna, my brother in-law lives in LA and I really wanted to be involved. She asked about 30 preliminary questions. I passed those fine. She said she would speak to the ones in charge. A few days later she called and asked if I could come down for the assessment which included a mammogram, cognitive testing, a gyno visit and blood work. A couple weeks later, Ricardo and I headed down. The testing went fine. We had to wait for my blood work to come back confirming that I don't have AIDS and syphillus. (whew, I don't) and then I was officially accepted.
On July 25, I go back for my '0 appointment' which is more testing to get my baseline levels before I get my pills. MRI, mammogram, cognitive testing and neurologist appointments.
This is a double blind study which means no one knows if I get the estriol or the placebo. It's 50/50 and all computerized. The computer decides and dispenses the pills and of course they all look the same. At first I didn't like the high amount of placebo but Ricardo made a good point. I have nothing to lose. I don't go off any of my MS drugs so if I get the placebo, it'd be the same as not being in the study. The placebo is necessary in a study to have an accurate comparison and avoid the placebo effect.
Thanks to everyone for the support and kind words. I'll keep you posted as the study goes on.