Quote:
Originally Posted by yeahbut
... What I was most impressed with and didn't realize is that "gray matter" that is very hard to detect is now a consideration of a dx. I haven't had time to go and research it more but hope to do it today.
This doctor is one to start treatment early. Feels that early treatment is very important. I was very impressed with the whole session. Learning more about Tysabri was good for I have never really investigated it...
I also would encourage people to attend if you are questioning treatment. I am going to another seminar on the 19th sponsored by Bayer.
What I was disappointed with and expressed to the reps was that we only heard the Con's of the drugs. Nothing about the possitive effects it has and how it has helped the ones who are still on it. I was told that it is not legal for them to do that. How sad! Yes, it is good to hear the con's but I am just as interested if not more in the possitive's of the drugs. They expressed they wish they could but they are stuck for legal reasons. Now that I would LOVE to be on a panel to change!
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Yabbit is right, the answers about damage to the gray matter were very interesting. What the doc said was that even if you don't have any lesions showing on MRI, damage is still going on. You have to use a high TESLA MRI to image the gray matter and for many reasons ( usually cost is # 1) high T MRI is not available in many areas, but that he would assume that gray matter damage is going on, and treat the disease.
She also mentioned early treatment. This doc is of the school of treatment as early in the disease as possible. He stated " We do not have a time machine to show us the future, but we can go back and look at the past and the past shows us that the later you start treatment, the worse off you will be later in life, and we can gather from what we see in patients who were diagnosed earlier, before treatment was available, that they are doing worse than people who were diagnosed and started treatment soon after drugs became available for treatment, in the same time frame"
One of the things that was funny was when he stated that when he asks a patient how they are doing, he gets the usual "Fine, thanks" but then he finds out that they are skipping shots (months and months of them in some cases!) after he questions them further. it got a good laugh from the audience and a lot of sidways looks and blushing from a lot of people there! He reiterated how important it is to stay on treatment and to be honest with your doctor if it's not working out for you, so that you can discuss other options!
As far as what Yabbit said about only hearing the cons of the drugs, she's right on that point too! I wanted to jump up and shout that I have had 20 infusions of Tysabri and how well it's worked out for me! I wish the pt. advocate had showed up and done his side of the talk. I think it would have helped a lot of the folks there to hear/see the other side of the story