the next step

This video pretty much sums up how I've felt about clinical trials for MS Drugs. I've always been leery of that option especially since there are always commercials for law firms saying "have you taken *insert drug here* in the last 2 years,have you experienced *insert horrible side effect or death here* call this 1 800 #"

I met with my new neurologist yesterday. I began the appointment meeting with the nurse. We went over my complete history so they could have an accurate account of my ms. I spent over 3 hours with the nurse and the neurologist and had things explained to me that no one has ever done before. Not only did they explain things but they explained them in "dumb people" terms. Nothing has made me more mad then when i would ask a doctor a question and get a response in doctor terms

We went through my MRI's one by one from the very first one. I was ab;e to actually see them and see where the lesions lie. Unfortunately, that also allowed me to see I REALLY am gaining new lesions every MRI :( This progression is aggressive and that is very scary.

Because of my MS's aggressive behavior, they once again want to change my medicine. This concept has always seemed to derail my life, however this time the thing that made me feel uneasy was the words "clinical trial"

After I swallowed the lump in my throat and got to here more about it... well.... i guess You can just call me a guinea pig.

The drug is called Tysabri, it's a once a month transfusion which beats the 3 times a week shots. It's actually been FDA approved since 2005 they just want to do some further tracking so it's no different then just being prescribed the drug. They will just want to track my tests, and the biggest plus is all my infusions, tests, and MRI's of the brain will be paid for. The next step is some blood work.

This new drug comes with some new risks, including contracting PML. A brain infection that can lead to death. Luckily there is a blood test that can check if I am positive or negative for the JCV Virus. the outcome of that tests will determine how high or low my risk of PML is and if I'm eligible for the trial.

I finally feel that I am with a doctor group that is going to care for me, and that makes the risks of Tysabri easier to stomach. Also on a side note, I was already getting tired of 3/week injections. And I know Mr. wonderful is getting tired of giving me shots in the butt.

We should have the results of the blood test in a few weeks so that will determine the next step.