I haven't blogged in a few days because I simply had too much going on. I had an appointment at UCLA yesterday. I can not believe how we were treated. We will NEVER go back to UCLA under any circumstances.
First we waited FOUR AND A HALF HOURS after my scheduled appointed before we were seen. Then, it was clear the physician I saw, while she was very knowledgeable hadn't read my chart.
I was sent to UCLA strictly for an evaluation for Tysabri. The MD informed me that they are NOT affiliated with the Tysabri Touch program. In other words the appointment for me, was a complete waste of time.
However, I did learn a few things that I will pass on. I learned that my right eye has been permanently damaged because of the bought of optic neuritis I've had over the past year. Wonderful.
I also learned that the research they are doing with MS is not only geared to finding a cure, but to identify the different TYPES of MS. I'm not talking about RRMS, SPMS etc. They are working on actually identifying sub groups so they can focus on what treatment works best for that sub group.
How they are identifying the subgroups is through testing for specific antibodies. Pretty interesting . It means that they are identifying that there is commonalty between MS patients besides just the diagnosis. I will tell you more as I learn more about it.
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